scholarly journals “A piece of paper is not the same as having someone to talk to”: accessing post-diagnostic dementia care before and since COVID-19 and associated inequalities

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Clarissa Giebel ◽  
Kerry Hanna ◽  
Hilary Tetlow ◽  
Kym Ward ◽  
Justine Shenton ◽  
...  
Keyword(s):  
Social Support ◽  
Thematic Analysis ◽  
Support Services ◽  
Support Service ◽  
Dementia Care ◽  
Service Usage ◽  
Support Provision ◽  
Social Support Services ◽  
Day Care Centres ◽  
New Inequalities

Abstract Background Social support services such as day care centres are important in post-diagnostic dementia care to enable people living with dementia stay at home for longer. Little research has addressed potential inequalities in access, with no research on variations before and since COVID-19. The aim of this study was to explore inequalities in social support service usage before and since the pandemic. Methods Unpaid carers and people living with dementia were interviewed over the phone about their experiences of accessing social support services before and since the COVID-19 pandemic. Transcripts were analysed for key themes using inductive and deductive thematic analysis. Results Fifty participants (42 unpaid carers; eight people living with dementia) were interviewed, and five themes identified: (1) Service issues; (2) Access issues; (3) Relying on own initiative; (4) New inequalities due to COVID-19; and (5) Missing out on the benefits of support services. Participants reported transport, finances, and location as factors reducing their ability to access support service pre-COVID, with inequalities remaining and at times exacerbated since. Carers and people living with dementia also reported struggling with accessing basic necessities during COVID, including food and medicines. Conclusions Considering the benefits of accessing support services, resourced procedures and facilities are needed to maintain access to support services with more accessible remote support provision, enabling people from all backgrounds to access the care they need.

scholarly journals COVID-19-related social support service closures and mental well-being in older adults and those affected by dementia: a UK longitudinal survey

BMJ Open ◽  
2021 ◽  
Vol 11 (1) ◽  
pp. e045889
Author(s):  
Clarissa Giebel ◽  
Daniel Pulford ◽  
Claudia Cooper ◽  
Kathryn Lord ◽  
Justine Shenton ◽  
...  
Keyword(s):  
Social Support ◽  
Older Adults ◽  
Support Services ◽  
Service Use ◽  
Well Being ◽  
Support Service ◽  
Vulnerable Groups ◽  
Service Usage ◽  
Social Support Services ◽  
Mental Well Being

BackgroundThe COVID-19 pandemic has had a major impact on delivery of social support services. This might be expected to particularly affect older adults and people living with dementia (PLWD), and to reduce their well-being.AimsTo explore how social support service use by older adults, carers and PLWD, and their mental well-being changed over the first 3 months since the pandemic outbreak.MethodsUnpaid dementia carers, PLWD and older adults took part in a longitudinal online or telephone survey collected between April and May 2020, and at two subsequent timepoints 6 and 12 weeks after baseline. Participants were asked about their social support service usage in a typical week prior to the pandemic (at baseline), and in the past week at each of the three timepoints. They also completed measures of levels of depression, anxiety and mental well-being.Results377 participants had complete data at all three timepoints. Social support service usage dropped shortly after lockdown measures were imposed at timepoint 1 (T1), to then increase again by T3. The access to paid care was least affected by COVID-19. Cases of anxiety dropped significantly across the study period, while cases of depression rose. Well-being increased significantly for older adults and PLWD from T1 to T3.ConclusionsAccess to social support services has been significantly affected by the pandemic, which is starting to recover slowly. With mental well-being differently affected across groups, support needs to be put in place to maintain better well-being across those vulnerable groups during the ongoing pandemic.

scholarly journals Prevalence and Predictors of Social Support Utilization among Cancer Patients Undergoing Treatment

2014 ◽  
Vol 7 (4) ◽  
pp. 139-148
Author(s):  
John Hunninghake ◽  
Fanglong Dong ◽  
Robert B Hines ◽  
Elizabeth Ablah ◽  
Sarah Taylor
Keyword(s):  
Social Support ◽  
Cancer Patients ◽  
Support Services ◽  
Kansas City ◽  
Stage Iv ◽  
Final Analysis ◽  
Support Service ◽  
Cancer Stage ◽  
Cross Sectional ◽  
Social Support Services

Background. The purpose of this study was to quantify the prevalence of cancer patients utilizing social support services while undergoing treatment and to identify patient and clinical factors associated with utilization of such services. Methods. This was a cross-sectional study. Surveys were distributed to three cancer clinics at 11 locations in the greater Kansas City metropolitan area in 2010. Study inclusion criteria included being at least 18 years old and undergoing treatment for cancer at the time of survey completion. Results. A total of 465 oncology patients completed surveys. Two-thirds (67.5%, n = 314) were undergoing treatment for cancer and were included in the final analysis. More than half (63.7%, n = 198) were female, and the average age was 58.9 ± 13.3 years. More than one-third (37.4%, n = 117) reported using cancer-related social support services. Additionally, 22% (n = 69) reported not using support services but were interested in learning more about those services. Patients had increased odds of having used support services if they were female (OR = 2.67; 95% CI = 1.47, 4.82), were younger adults, or had stage I-III (OR = 2.67; 95% CI 1.32, 5.26) or stage IV cancer (OR = 2.3; 95% CI 1.14, 4.75) compared to those who did not know their cancer stage. Conclusions. More than one-third of patients reported using social support services. A substantial portion of participants reported not using support services but were interested in learning more about those services. Increasing social support service utilization might be especially important to explore for men, those who do not know their cancer stage, and older adults.

scholarly journals Emotional and Mental Wellbeing Following COVID-19 Public Health Measures on People Living With Dementia and Carers

2021 ◽  
pp. 089198872199681
Author(s):  
Kerry Hanna ◽  
Clarissa Giebel ◽  
Hilary Tetlow ◽  
Kym Ward ◽  
Justine Shenton ◽  
...  
Keyword(s):  
Public Health ◽  
Mental Health ◽  
Social Support ◽  
Support Services ◽  
Mental Wellbeing ◽  
Daily Lives ◽  
Health Measures ◽  
Social Support Services ◽  
The Uk ◽  
The Impact

Background: To date, there appears to be no evidence on the longer-term impacts caused by COVID-19 and its related public health restrictions on some of the most vulnerable in our societies. The aim of this research was to explore the change in impact of COVID-19 public health measures on the mental wellbeing of people living with dementia (PLWD) and unpaid carers. Method: Semi-structured, follow-up telephone interviews were conducted with PLWD and unpaid carers between June and July 2020. Participants were asked about their experiences of accessing social support services during the pandemic, and the impact of restrictions on their daily lives. Results: 20 interviews were conducted and thematically analyzed, which produced 3 primary themes concerning emotional responses and impact to mental health and wellbeing during the course of the pandemic: 1) Impact on mental health during lockdown, 2) Changes to mental health following easing of public health, and 3) The long-term effect of public health measures. Conclusions: The findings from this research shed light on the longer-term psychological impacts of the UK Government’s public health measures on PLWD and their carers. The loss of social support services was key in impacting this cohort mentally and emotionally, displaying a need for better psychological support, for both carers and PLWD.

Coping with Genetic Disorder: A Sociological Understanding of Parent-Caregivers' Experiences

2005 ◽  
Vol 13 (4) ◽  
pp. 315-331 ◽  
Author(s):  
Tanuka Roy ◽  
Suhita Chopra Chatterjee
Keyword(s):  
Social Support ◽  
Support Services ◽  
Genetic Disorder ◽  
Intervention Strategies ◽  
Stress And Strain ◽  
Religious Background ◽  
Existential Crisis ◽  
Social Support Services ◽  
Parent Caregivers ◽  
Culturally Sensitive Intervention

Parent-caregivers (PACs) of Thalassaemic children face a variety of stress and strain. The article looks into the different experiences of PACs in a relatively underdeveloped setting in India characterized by poor medical and social support services. The problem is compounded by illiteracy and poverty of the PACs. The study highlights the different ways in which PACs cope with the existential crisis of illness in their lives. Central to coping, meanings play an important role. Hoping and normalization are other mechanisms which help them to confront the crisis. The findings indicate considerable differences in caregiving experiences according to PACs' education and religious background. These differences are also reflected in their awareness and preferences for different intervention programmes. The article concludes by indicating the need to develop culturally sensitive intervention strategies which can take into account these variations.

How to support families of children with disabilities? An exploratory study of social support services

2012 ◽  
Vol 19 (3) ◽  
pp. 272-281 ◽  
Author(s):  
Sylvie Tétreault ◽  
Sophie Blais-Michaud ◽  
Pascale Marier Deschênes ◽  
Pauline Beaupré ◽  
Hubert Gascon ◽  
...  
Keyword(s):  
Social Support ◽  
Support Services ◽  
Exploratory Study ◽  
Children With Disabilities ◽  
Social Support Services

scholarly journals How New and Expecting Fathers Engage With an App-Based Online Forum: Qualitative Analysis (Preprint)

2018 ◽  
Author(s):  
Becky K White ◽  
Roslyn C Giglia ◽  
Jane A Scott ◽  
Sharyn K Burns
Keyword(s):  
Social Support ◽  
Qualitative Analysis ◽  
Thematic Analysis ◽  
Software Package ◽  
Perinatal Period ◽  
Mobile App ◽  
Informational Support ◽  
Online Forum ◽  
Support Provision ◽  
Paternal Support

BACKGROUND Breastfeeding is important for infants, and fathers are influential in supporting their partner in their decision to breastfeed and how long they breastfeed for. Fathers can feel excluded from traditional antenatal education and support opportunities but highly value social support from peers. Online health forums can be a useful source of social support, yet little is known about how fathers would use a conversation forum embedded in a breastfeeding-focused app. Milk Man is a mobile app that aimed to increase paternal support for breastfeeding using a range of strategies, including a conversation forum. OBJECTIVE The aim of this study was to examine how fathers used a breastfeeding-focused conversation forum contained within a mobile app throughout the perinatal period. METHODS A qualitative analysis of comments posted by users in the online forum contained within the Milk Man app was conducted. The app contained a library of information for fathers, as well as a conversation forum. Thematic analysis was used to organize and understand the data. The NVivo 11 software package was used to code comments into common nodes, which were then organized into key themes. RESULTS In all, 208 contributors (35.5% [208/586] of those who had access to the app) posted at least once within the forum. In total, 1497 comments were included for analysis. These comments were coded to 3799 individual nodes and then summarized to 54 tree nodes from which four themes emerged to describe how fathers used the app. Themes included seek and offer support, social connection, informational support provision, and sharing experiences. Posting in the forum was concentrated in the antenatal period and up to approximately 6 weeks postpartum. CONCLUSIONS These data show that fathers are prepared to use a breastfeeding-focused online forum in a variety of ways to facilitate social support. Fathers can be difficult to reach in the perinatal period, yet engaging them and increasing social support is important. This research demonstrates the acceptability of an innovative way of engaging new and expecting fathers.

scholarly journals Leaving rehab: enhancing transitions into stable housing

2021 ◽  
Author(s):  
Cameron Duff ◽  
Nicholas Hill ◽  
Hazel Blunden ◽  
kylie valentine ◽  
Sean Randall ◽  
...  
Keyword(s):  
Mental Health ◽  
Social Support ◽  
Substance Use ◽  
Support Services ◽  
Transition Planning ◽  
International Comparisons ◽  
Housing Instability ◽  
Substance Use Problems ◽  
Stable Housing ◽  
Social Support Services

The project will examine the coordination between residential treatment and housing and social support services using international comparisons and linked administrative data followed by testing in the field. It aims to enhance transition planning and reduce the risk of housing instability for individuals leaving treatment for mental health and/or substance use problems.

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