P12.06 Unmet needs and wish for support of informal caregivers of primary brain tumour patients

2021 ◽  
Vol 23 (Supplement_2) ◽  
pp. ii31-ii32
Author(s):  
L Pointon ◽  
R Grant ◽  
S Peoples ◽  
S Erridge ◽  
P Sherwood ◽  
...  
Keyword(s):  
Clinical Practice ◽  
Disease Progression ◽  
Family Caregivers ◽  
Brain Tumour ◽  
Unmet Needs ◽  
Emotional Health ◽  
Informal Caregivers ◽  
Family Members ◽  
Primary Brain Tumour ◽  
Caregiver Needs

Abstract BACKGROUND Most primary brain tumour patients rely on informal caregivers (i.e. family members or friends) for practical and emotional support. While caregiving can be rewarding, it also commonly leads to significant burden. In developing support for caregivers, it is vital to distinguish between caregivers’ unmet needs, and their actual wish for support to resolve unmet needs. We aimed to 1) identify the presence and magnitude of unmet needs; 2) examine associations between unmet needs and desire for support; 3) evaluate perceived usefulness of caregiver needs screening in clinical practice. MATERIAL AND METHODS Family caregivers of patients with primary brain tumours were recruited and asked to complete an adapted version of the Caregiver Needs Screen (CNS). This covered the level of distress resulting from 33 common issues in neuro-oncology caregiving (scale 0–10), and wish for information or support for any issue (yes/no). In addition, participants were asked to rank (0–7) their experience of using the CNS based on items covering ‘ease of us’, ‘usefulness’ and ‘satisfaction’. Descriptive and correlational analyses were applied. RESULTS Caregivers (N=79) reported between 1–33 unmet needs (M=17.20, sd=7.98) but did not always wish for support for each need (range 0–28, M=4.71, sd=6.63). Most distressing items were patient’s fatigue (M=5.58), recognising signs of disease progression (M=5.23), changes in patients’ thinking or behaviour (M=5.04), patient distress or sadness (M=4.68), and changes in caregivers’ own emotional health (M=4.44). A weak correlation was found between the total number of unmet needs and the desire for support (r=0.296, p=0.014). Caregivers most often desired support with recognising disease progression (N=24), managing medications and side-effects (N=18), and least often with managing spiritual issues (N=0), communication with (grand)children (N=2) and communication with family members and friends (N=3). Caregivers evaluated the CNS tool positively (mean item scores ranging 4.19–6.21 out of 7). CONCLUSION Family caregivers of brain tumour patients experience distress resulting from many neuro-oncology specific needs, but this is not directly related to a wish for support or information. Caregiver needs screening could be useful to tailor support or information to suit caregivers’ preferences in clinical practice.

NCOG-49. UNMET NEEDS AND WISH FOR SUPPORT OF FAMILY CAREGIVERS OF PRIMARY BRAIN TUMOUR PATIENTS

2021 ◽  
Vol 23 (Supplement_6) ◽  
pp. vi162-vi163
Author(s):  
Lucy Pointon ◽  
Robin Grant ◽  
Sharon Peoples ◽  
Sara Erridge ◽  
Paula Sherwood ◽  
...  
Keyword(s):  
Clinical Practice ◽  
Disease Progression ◽  
Family Caregivers ◽  
Brain Tumour ◽  
Unmet Needs ◽  
Perceived Usefulness ◽  
Primary Brain Tumour ◽  
Significant Burden ◽  
Caregiver Needs ◽  
Item Scores

Abstract BACKGROUND Most primary brain tumour patients rely on informal caregivers (i.e. family members or friends) for practical and emotional support. While caregiving can be rewarding, it may lead to significant burden. To develop support it is therefore vital to distinguish between unmet needs, and an actual wish for support. Study aims: 1) identify the presence and magnitude of caregivers’ unmet needs; 2) examine associations between unmet needs and wish for support; 3) evaluate perceived usefulness of caregiver needs screening in clinical practice. METHODS Family caregivers of primary brain tumour patients were recruited and asked to complete an adapted version of the Caregiver Needs Screen (CNS) which consisted of 33 common issues in neuro-oncology caregiving (scale 0-10), and the wish for support (yes/no). Participants ranked (0-7) their experience of using the CNS with a study-specific evaluation questionnaire. Descriptive and correlational analyses were applied. RESULTS Caregivers (N=79) reported between 1-33 unmet needs (M=17.20, sd=7.98) but did not always wish for support (range 0-28, M=4.71, sd=6.63). Most distressing items were changes in patient’s memory or concentration (M=5.75, SD=3.29), followed closely by patient’s fatigue (M=5.58, SD= 3.43), and recognising signs of disease progression (M=5.23, SD= 3.15). A weak correlation was found between the total number of unmet needs and wish for support (r=0.296, p=0.014). Caregivers most often wished for support with recognising disease progression (N=24, 34.78%), and least often with managing spiritual issues (N=0, 0%). Caregivers evaluated the CNS tool positively (mean item scores ranging 4.19-6.21 out of 7). CONCLUSIONS Family caregivers experience distress resulting from many neuro-oncology specific needs, but this is not directly related to a wish for support. Caregiver needs screening could be useful to tailor support to suit caregivers’ preferences in clinical practice.

scholarly journals Family caregiver support—a facilitator to empower family caregivers

2021 ◽  
Vol 31 (Supplement_2) ◽  
Author(s):  
Sílvia Fernandes ◽  
Paula Portugal ◽  
Lhara Mullins ◽  
Martin Power ◽  
Marina Letica-Crepulja ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Family Caregiver ◽  
Medical Information ◽  
Social Care ◽  
Emotional Health ◽  
Family Members ◽  
Mobile App ◽  
Caregiver Support ◽  
Support Strategies ◽  
Health Disorders

Abstract Background Mental disorders are highly prevalent, placing an enormous burden on individuals, society and economy. Research shows that family members who provide care to individuals with chronic or disabling mental conditions are themselves at risk. As a response to this problem, the project ‘Family Caregiver Support - Strategies and tools to promote the mental and emotional health of caregivers’ emerged, funded by Erasmus + Program and carried out by 8 European partners including ESS|P.PORTO. Objectives To empower family members as caregivers and to give them access to relevant medical information and to psychological support for their own needs. Methods A Guide and a Resource Pack concerning 9 important mental health disorders were developed. An interactive e-platform and a mobile App were developed to make available these materials. Validation of the products was carried out, in each country, by caregivers and health/social care professionals through online questionnaires. Data were collected and processed in an anonymous manner, and the confidentiality was ensured. Results In Portugal, 98% of respondents (25 caregivers/citizens interested on subject, and 25 health/social care professionals), consider the accessibility and attractivity of the platform very good or excellent; and more than 90% consider materials very effective for the caregiver’s empowerment. Some issues were identified to add to Resource Pack. Conclusions Data from partners is being processed but there is already strong evidence of the usability and efficacy of the project’s outcome, and a strong contribution was done for adult education concerning physical, mental and emotional health promotion of family caregivers.

scholarly journals CAREGIVERS’ NEEDS IN CARING FOR RELATIVES WITH SCHIZOPHRENIA IN MEDAN INDONESIA: A PHENOMENOLOGICAL STUDY

2017 ◽  
Vol 3 (6) ◽  
pp. 656-661 ◽  
Author(s):  
Jenny Marlindawani Purba
Keyword(s):  
Home Care ◽  
Unmet Needs ◽  
Phenomenological Study ◽  
Family Members ◽  
Optimal Care ◽  
Knowledge And Skills ◽  
Long Period ◽  
Primary Nurse ◽  
Caregiver Needs ◽  
One Year

Background: A caregiver is a primary nurse and has a major role in providing care for people with schizophrenia. Caring for those with schizophrenia for a long period of time is a challenge for families, especially caregivers. Various needs ought to be studied by nurses to assist caregivers in providing optimal care for family members who experience schizophrenia.Objective: This qualitative study aims to explore the needs of caregivers in treating schizophrenia at home.Methods: The method used in this study is the method of purposive sampling with the number of participants as many as 10 people with criteria: 1) have family members diagnosed with schizophrenia, 2) directly involved in home care patients, 3) caring for schizophrenia for more than one year, 4) willing to be a participant by signing informed consent, 4) being able to identify what is needed in treating schizophrenia. Colaizzi is used to analyze interview data.Results: The results of the study found four themes of caregiver needs in caring for schizophrenia patients at home, ly: 1) seeking information about schizophrenia, 2) sought schizophrenic relatives’ recovery, 3) looking for appropriate rehabilitation for relatives with schizophrenias, and 4) utilizing mental health facilities.Conclusions: It is expected that nurses have the knowledge and skills in identifying and helping families, especially caregivers, to meet unmet needs so they can optimize home care.

Regenereation in periodontics

2018 ◽  
Author(s):  
Murtaza Kaderi ◽  
Mohsin Ali ◽  
Alfiya Ali ◽  
Tasneem Kaderi
Keyword(s):  
Tissue Engineering ◽  
Clinical Practice ◽  
Periodontal Disease ◽  
Disease Progression ◽  
Tissue Regeneration ◽  
Surgical Procedures ◽  
Periodontal Regeneration ◽  
Guided Tissue Regeneration ◽  
Periodontal Tissues ◽  
Extensive Documentation

The goals of periodontal therapy are to arrest of periodontal disease progression and to attain the regeneration of the periodontal apparatus. Osseous grafting and Guided tissue regeneration (GTR) are the two techniques with the most extensive documentation of periodontal regeneration. However, these techniques offer limited potential towards regenerating the periodontal tissues. Recent surgical procedures and application of newer materials aim at greater and more predictable regeneration with the concept of tissue engineering for enhanced periodontal regeneration and functional attachment have been developed, analyzed, and employed in clinical practice

scholarly journals The unmet needs of family members of patients with progressive neurological disease in the Czech Republic

PLoS ONE ◽  
2019 ◽  
Vol 14 (3) ◽  
pp. e0214395 ◽  
Author(s):  
Radka Bužgová ◽  
Radka Kozáková ◽  
Lubica Juríčková
Keyword(s):  
Czech Republic ◽  
Neurological Disease ◽  
Unmet Needs ◽  
Family Members ◽  
The Czech Republic

scholarly journals 411 - Implementing the STrAtegies for RelaTives (START) intervention in Portugal – preliminary findings

2020 ◽  
Vol 32 (S1) ◽  
pp. 127-127
Author(s):  
Fatima Urzal ◽  
Ana Quintão ◽  
Catarina Santos ◽  
Nuno Moura ◽  
Ana Banazol ◽  
...  
Keyword(s):  
Pilot Study ◽  
Coping Strategies ◽  
Family Caregivers ◽  
Clinical Training ◽  
Unmet Needs ◽  
Depression Scale ◽  
Subjective Impression ◽  
Implementation Challenges ◽  
People With Dementia ◽  
The Uk

IntroductionAs in other countries, Portuguese family caregivers have unmet needs regarding information and distress. START (STrAtegies for RelaTives) is a manual-based coping intervention for families of people with dementia, including coping strategies and stress-management components, by Livingston and colleagues (https://www.ucl.ac.uk/psychiatry/research/mental-health-older-people/projects/start). In the UK, START has been clinically effective, immediately and continuing even after 6-years, without increasing costs. Clinical training and supervision ensures treatment fidelity. In Portugal, these kind of interventions are less available and, when provided, are mostly supportive and fail to address coping strategies. Paradoxically, recruitment may also prove challenging.ObjectivesWe describe the development of the Portuguese translation of START, incorporating guidance from the UK team, and a pilot study of delivery to family caregivers of people with dementia. We will also discuss the challenges of recruiting participants and delivering the intervention.MethodWe translated the START intervention and recruited family caregivers from neurology and psychiatry outpatients, in a central hospital in Lisbon. Our baseline assessment included the Hospital Anxiety and Depression Scale and the Zarit Burden Interview. The pilot is still ongoing at time of submitting, so we focus on recruitment, baseline assessments and process issues.ResultsDuring a three-month period, we recruited six caregivers. Five were primary caregivers (spouses or adult children) who had been caring for their relatives for 2 up to 10 years. Two caregivers met the international cutoff for clinically relevant affective disorder . The most frequent motivators for taking part were learning to communicate with their relatives and increasing knowledge to build community resources. Overall, the subjective impression of the therapist in charge is that the intervention seems acceptable and promising.Discussion/ConclusionsThis pilot study will eventually lead to an improved version of the Portuguese version of the START manual. So far, the intervention seems appropriate for selected caregivers in Portugal. However, response to striking unmet needs, particularly basic home support, may need to precede interventions like START. We look forward to concluding the intervention study and analyzing the implementation challenges, as a basis to inform a wider-scale trial.

323 The Subcellular Expression Patterns of Bcl-Xl in Primary Brain Tumour Samples

2021 ◽  
Vol 108 (Supplement_2) ◽  
Author(s):  
A Vassiliou ◽  
K Alavian ◽  
M Tsujishita ◽  
H Bae
Keyword(s):  
Brain Tumour ◽  
Tumour Progression ◽  
Expression Patterns ◽  
B Cell Lymphoma ◽  
Nuclear Antigen ◽  
Future Research ◽  
Metabolic Efficiency ◽  
Cell Detection ◽  
Primary Brain Tumour ◽  
Cancerous Cells

Abstract Introduction Primary brain tumours originate from cells within the brain. The commonest malignant types are gliomas which are graded from I-IV. Emerging evidence has elucidated the function of the mitochondrially localised B-cell lymphoma-extra-large (Bcl-xL) protein, and its promotion of tumour progression-associated properties. Our lab has previously established that Bcl-xL-overexpressing neurons increase metabolic efficiency by producing more adenosine triphosphate and consuming less oxygen, which we assumed, fuels cancer cells to proliferate. Method We quantified the subcellular expression patterns of Bcl-xL in primary brain tumour samples through immunohistochemistry on a brain tissue microarray containing 16 glioma cases from Grades II-IV. We used antibodies against Bcl-xL, heat shock protein 60 for mitochondrial detection and proliferating cell nuclear antigen for cancerous cell detection. Results Bcl-xL is overexpressed in cancerous cells of Grade IV gliomas and is significantly greater than cancerous cells of Grade III and Grade II gliomas. Cancerous cells express higher levels of Bcl-xL than non-cancerous cells in all grades of glioma. Conclusions Bcl-xL-overexpressing neurons exhibit enhanced metabolic efficiency, contributing to increased proliferation rates. Future research should focus on the characterisation of ATP levels and oxygen consumption in glioma cells. Conclusively, pharmacological inhibition of Bcl-xL will suppress the proliferation rate in gliomas and cease cancer cell growth.

scholarly journals Caring for Older Patients With Cancer: Estimates of the Prevalence, Burden, and Unmet Needs of Caregivers in the United States

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 690-690
Author(s):  
Erin Kent
Keyword(s):  
Family Caregivers ◽  
Older Patients ◽  
Unmet Needs ◽  
The United States ◽  
Population Based ◽  
Data Sources ◽  
Behavioral Risk ◽  
Ripple Effect ◽  
The Us ◽  
National Trends

Abstract In 2020, ~1.8 million Americans are expected to be newly diagnosed with cancer, with approximately 70% of cases diagnosed over the age of 65. Cancer can have a ripple effect, impacting not just patients themselves, but their family caregivers. This presentation will provide an overview of the estimates of the number of family caregivers caring for individuals with cancer in the US, focusing on older patients, from several population-based data sources: Caregiving in the US 2020, the Health Information National Trends Survey (HINTS, 2017-2019), the Behavioral Risk Factors Surveillance System (BRFSS, 2015-2019), and the National Health and Aging Trends (NHATS) Survey. The presentation will compare features of the data sources to give a comprehensive picture of the state of cancer caregiving. In addition, the presentation will highlight what is known about the experiences of cancer caregivers, including caregiving characteristics, burden, unmet needs, and ideas for improving support for family caregivers.

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