Dataset Information

An online survey of informal caregivers' unmet needs and associated factors.

ABSTRACT: Purpose/objective: The purpose of this study was to assess the frequency of unmet needs of carers among a convenience sample of carers, and the participant factors associated with unmet needs, to inform the development of interventions that will support a range of caregivers. The aims of this study were to: (1) assess the most frequently reported moderate-high unmet needs of caregivers; and (2) examine the age, gender, condition of the care recipient, and country variables associated with types of unmet needs reported by informal caregivers.

Research method/design: An online cross-sectional survey among informal caregivers in English-speaking countries was conducted. Self-reported unmet needs were assessed using an unmet needs measure with the following five unmet needs domains: (1) Health information and support for care recipient; (2) Health service management; (3) Communication and relationship; (4) Self-care; and (5) Support services accessibility. Informal caregivers were asked "In the last month, what was your level of need for help with…", and the ten highest ranked moderate-high unmet needs presented as ranked proportions. Logistic regression modelling examined the factors associated with types of unmet needs.

Results: Overall, 457 caregivers were included in the final analysis. Seven of the ten highest ranked unmet needs experienced by caregivers in the last month were in the Self-care domain, including "Reducing stress in your life" (74.1%). Significant associations were found between younger caregiver age (18-45 years) and reporting moderate-high unmet needs in Health Information and support for care recipient, Health service management, and Support services accessibility (all p's = <0.05).

Conclusions/implications: Caregivers are not experiencing significant differences in unmet needs between countries and caree/care recipient conditions, suggesting that general interventions could be developed to support a range of caregivers across countries. Increased awareness of informal caregivers' unmet needs, particularly for younger caregivers, among health care providers may improve support provision to caregivers.

SUBMITTER: Denham AMJ

PROVIDER: S-EPMC7728235 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

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An online survey of informal caregivers' unmet needs and associated factors.

Denham Alexandra M J AMJ Wynne Olivia O Baker Amanda L AL Spratt Neil J NJ Turner Alyna A Magin Parker P Palazzi Kerrin K Bonevski Billie B

PloS one 20201210 12

<h4>Purpose/objective</h4>The purpose of this study was to assess the frequency of unmet needs of carers among a convenience sample of carers, and the participant factors associated with unmet needs, to inform the development of interventions that will support a range of caregivers. The aims of this study were to: (1) assess the most frequently reported moderate-high unmet needs of caregivers; and (2) examine the age, gender, condition of the care recipient, and country variables associated with ...[more]

PMID: 33301483

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Project description:BACKGROUND:This 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. METHODS:Ten 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. RESULTS:Fifty 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. CONCLUSION:Both 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.

Project description:BackgroundFamily caregivers are often the first line of support for people requiring care; although they may personally stand to benefit, these activities substantially increase the risk of physical and emotional stress. General practitioners (GPs) may provide important support and stabilisation, but need to adjust to the needs and expectations of this group in order to do so. The aim of the study was to compare the needs of family caregivers from GPs to the support they actually experience. Additional aims included determining the main factors affecting satisfaction amongst family caregivers with support from GPs. The results were used to develop possible approaches towards optimisation within the purview of general medical practice.MethodsBetween January and July 2020, 612 people supporting or caring for a family member responded to an online survey posted in seventeen internet forums focused on family caregivers. In addition to the descriptive analysis, a t-test with independent samples was used to identify significant differences between two groups. We also used binary logistic regression analysis to identify indications of potentially influential factors regarding the experienced support from GPs.ResultsAround three out of every four respondents (72%) consulted GPs in care matters. The respondents gave positive responses on their GP's knowledge of the care situation (71%), approachability in various issues connecting with care and service towards the caregiver (82%). GPs' efforts in meeting the needs and requirements of the care recipient were also rated positively (82%). Weaknesses in support from GPs mainly involved the lack of information on advice and assistance services (55%) as well as frequently not identifying or involving caregivers as such soon enough (42%). Results from regression analysis show that the last two aspects play a major role in subjective satisfaction amongst family caregivers with support from GPs.ConclusionsWe recommend that GPs undergo further training to reinforce awareness that the care triad of needs, requirements and stresses amongst family caregivers also plays a vital role in care outcomes. With this in mind, general practice staff should adopt a pre-emptive strategy towards approaching family members about potential issues and informing them about existing assistance and support services.

Project description:Study objectiveTo investigate the association between family cancer caregivers' unmet daily needs and emotional states of depression, anxiety and stress across their care recipient's treatment phases.MethodA cross-sectional study design and self-report questionnaires were used. Family caregivers (N = 237) of cancer patients in ambulatory cancer clinics were recruited from May to December 2017, and completed a sociodemographic and medical questionnaire, the Depression Anxiety Stress Scale and Needs Assessment of Family Caregivers-Cancer Scale. Hierarchical linear regression was conducted to examine the influence of each predictor (sociodemographic variables, unmet personal care and role management needs, cancer treatment phase) on the Depression Anxiety Stress Scale total score, depression subscale, anxiety subscale, and the stress subscale.ResultsFamily caregivers' unmet daily activity needs, in particular higher unmet personal care needs, during the intermediate phase (6-9 months), were significantly associated (ps<0.05) with overall distress (b = 4.93) and stress (b = 2.26). In the chronic treatment phase (>9 months), the significant association of unmet personal care needs was with overall distress (b = 5.91), anxiety (b = 1.97) and stress (b = 2.53). After completing treatment, unmet role management needs were only significantly associated with stress (b = -1.59). Caregivers' higher depression was also associated with greater unmet role management needs, regardless of treatment phases.ConclusionsIntermediate and chronic cancer treatment phases were identified as having greatest effect on caregivers' unmet daily activity needs and emotions. Unmet personal care needs played the major effect on overall negative emotional states in the intermediate treatment phase and stress in the chronic treatment phase. Close attention to caregivers needs in intermediate and chronic treatment phases, would be highly beneficial in alleviating negative emotional disturbances.

Project description:ImportanceUnderstanding the challenges faced by an increasing number of cancer survivors can guide the development and implementation of effective survivorship care models.ObjectiveTo identify the physical, emotional, and practical concerns and associated unmet needs reported by cancer survivors.Design, setting, and participantsThis cross-sectional survey study obtained data from the Experiences of Cancer Patients in Transitions Study of the Canadian Partnership Against Cancer, in collaboration with cancer agencies in the 10 Canadian provinces, that was disseminated in 2016. This analysis included only adult survivors aged 30 years or older who underwent chemotherapy, radiation therapy, surgical treatment, or a combination of these therapies for breast, prostate, colorectal, melanoma, or hematological cancer within the past 1 to 3 years. Data synthesis and quality assessment were conducted in 2017. Data analysis was completed in July 2019.Main outcomes and measuresThe outcomes were the (1) quantification of the magnitude and multiplicity of the physical, emotional, and practical concerns of adult survivors of breast, colorectal, prostate, melanoma, or hematological cancer; (2) exploration of the magnitude of associated unmet needs; and (3) identification of patient-, treatment-, and cancer-specific factors associated with the reporting of unmet needs.ResultsOverall, 10 717 adult respondents were included (5660 [53%] female and 6367 [60%] aged ≥65 years). The median number of concerns per respondent was 6 (interquartile range [IQR], 3-10). Among respondents with concerns, help was sought for a median of 2 (IQR, 0-4) concerns. Unmet needs were reported for a median of 4 (IQR, 2-7) concerns. Emotional concerns were reported by 8330 respondents (78%), physical concerns by 9236 respondents (86%), and practical concerns by 4668 respondents (44%). At least 1 unmet need was reported by 7033 survivors (84%) with emotional concerns, 7475 (81%) with physical concerns, and 3459 (74%) with practical concerns. Age, sex, annual income, marital status, geographic location, language, and treatment type were significant factors associated with unmet needs. Survivors of melanoma cancer had a significantly higher likelihood of reporting unmet emotional needs (odds ratio [OR], 1.75; 95% CI, 1.17-2.61; P = .01), whereas survivors of prostate (OR, 0.60; 95% CI, 0.43-0.84; P < .001) and hematological (OR, 0.70; 95% CI, 0.50-0.99; P = .04) cancers were significantly less likely to report unmet needs for physical concerns when compared with breast cancer survivors. Involvement of the general practitioner combined with the oncologist in providing care was associated with a significantly lower likelihood of reporting unmet emotional (OR, 0.78; 95% CI, 0.62-1.00; P = .05) and practical (OR, 0.72; 95% CI, 0.55-0.94; P = .01) needs.Conclusions and relevanceThe extent of unmet needs among cancer survivors found in this study suggests the need for enhancements in survivorship care, including better awareness of the realities of survivorship, earlier interventions for emerging concerns among survivors, and greater integration of cancer programs and primary care for more seamless transitions.

Project description:IntroductionA demand for informal care exists worldwide. Lithuania presents an interesting case example where the need for the informal care is increasing, but relatively little research has been conducted documenting caregivers' experiences and needs.ObjectivesThe main objective of this study was to investigate Lithuanian informal caregiver characteristics, support needs and burden. In addition, the impact of the COVID-19 on the caregiver's and care receiver's well-being was investigated.MethodsThe study was conducted online between May and September 2020. Informal caregivers and individuals with informal caregiving experiences were invited to participate in the survey. The survey questionnaire comprised 38 multiple-choice items including participant demographic characteristics, availability of the support, support needs, well-being and the impact of the COVID-19 pandemic. In addition, caregiver burden was assessed with the 24-item Caregiver Burden Inventory (CBI).ResultsA total of 226 individuals completed the survey. Most of the participants were women (87.6%). Almost half of the participants (48.7%) were not receiving any support, and a total of 73.9% expressed a need to receive more professional support. Participants were found to experience high burden on the CBI (M=50.21, SD=15.63). Women were found to be significantly more burdened than men (p=0.011). Even though many participants experienced psychological problems (55.8%), only 2.2% were receiving any psychological support. Finally, majority of the participants did not experience any changes in their own (63.7%) or the well-being of their care receiver (68.1%) due to the COVID-19 pandemic.ConclusionMost of the participants were identified as intensive caregivers experiencing a high burden. A majority did not experience changes in their well-being due to COVID-19. We propose several recommendations for increasing accessibility and availability of support for informal caregivers in Lithuania based on the study findings.

Dataset Information

An online survey of informal caregivers' unmet needs and associated factors.

Publications

An online survey of informal caregivers' unmet needs and associated factors.

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