scholarly journals Development and evaluation of the Good Grief program for young people bereaved by familial cancer

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Pandora Patterson ◽  
Fiona E. J. McDonald ◽  
Elizabeth Kelly-Dalgety ◽  
Bianca Lavorgna ◽  
Barbara L. Jones ◽  
...  
Keyword(s):  
Social Support ◽  
Personal Growth ◽  
Unmet Needs ◽  
Meaning Making ◽  
Familial Cancer ◽  
Psychosocial Needs ◽  
Program Satisfaction ◽  
Death Of A Parent

Abstract Background Adolescents and young adults (AYAs) bereaved by the death of a parent or sibling from cancer report unique psychosocial needs and can have difficulty adjusting to their loss. Unaddressed, this can result in poor long-term bereavement outcomes. This paper describes the development and evaluation of Good Grief – a 3-day camp-based program focused on meeting coping, social support, and respite needs of AYAs bereaved by familial cancer. Methods One hundred and nine Australian AYAs (68% female; age: 12–25 years, M = 16.63) participated in the evaluation. Grief intensity (Texas Revised Inventory of Grief), meaning-making (Grief and Meaning Reconstruction Inventory), trauma coping (Perceived Ability to Cope with Trauma Scale) and unmet needs (Bereaved Cancer Needs Instrument) measures were administered pre-program and 3-months post-program. Acceptability was measured after each session and at the program’s conclusion. Appropriateness was measured at 3-month follow-up. Thirteen participants were interviewed three months post-program on their perceptions of the program. Results Participants reported high program satisfaction, engagement with psychosocial sessions, and enjoyment of recreational activities. Significant improvements were observed in trauma coping abilities and reductions in unmet needs for managing emotions, social support, respite, future planning, and accessing information and support domains. No change was evident in grief intensity or meaning-making as measured quantitatively. Interviews supported these quantitative findings but also identified evidence of personal growth, a component of meaning-making. Conclusions Good Grief is a highly acceptable and beneficial intervention that addresses the unique needs of AYAs bereaved by familial cancer.

scholarly journals 325 - Relationship quality in dementia: Preliminary longitudinal analyses of the EU-JPND Actifcare cohort study

2020 ◽  
Vol 32 (S1) ◽  
pp. 83-83
Author(s):  
Maria J. Marques ◽  
Bob Woods ◽  
Eva Y.L. Tan ◽  
Marjolein de Vugt ◽  
Frans Verhey ◽  
...  
Keyword(s):  
Social Support ◽  
Cohort Study ◽  
Relationship Quality ◽  
Sense Of Coherence ◽  
Unmet Needs ◽  
Neuropsychiatric Symptoms ◽  
Longitudinal Analyses ◽  
Family Carers ◽  
Over Time

INTRODUCTIONRelationship quality (RQ) in dyads of persons with dementia and their family carers is important both as a clinical outcome and as a determinant of health and quality of life. In previous work we studied RQ using baseline data of a large-scale European longitudinal study on timely access to and use of community formal services in dementia (EU-JPND Acticare). We concluded that neuropsychiatric symptoms and carer stress contributed to discrepancies in RQ ratings within the dyad, which were less favourable when reported by family carers. This and other associations (e.g. between carer-rated RQ and sense of coherence) were cautiously interpreted, in the context of a cross-sectional analysis.OBJECTIVESTo analyse how carer-reported RQ varies over time and to examine its most important influencing factors.METHODSWe present preliminary longitudinal analyses from the Actifcare cohort study of 451 community-dwelling persons with dementia and their primary carers in eight European countries (12-month follow-up). Comprehensive assessments included the Positive Affect Index (PAI) to assess RQ, persons with dementia’s neuropsychiatric symptoms, persons with dementia and carers’ unmet needs, carers’ anxiety and depression, social support, sense of coherence and stress.RESULTSCarers’ mean PAI scores decreased over the 12 -month period. The person with dementia neuropsychiatric symptoms and unmet needs, and carers’ perceived social support were significant predictors of carers’ RQ change.DISCUSSION AND CONCLUSIONWe analysed carer-reported RQ variation over time and predictors in a large European sample of persons with dementia and their family carers. As expected, RQ decreased over the oneyear follow-up period as the disease progressed. Its main predictors in this sample (neuropsychiatric symptoms and the person’s unmet needs, together with carers’ social support) can all influence the impact that caregiving has on the carer and on how time and energy-consuming caregiving is. The role of increased clinical symptoms (also affecting communication difficulties), together with carers’ exhaustion, must be equated. Overall, these results may help us to tailor interventions addressing RQ and potentially improve dementia outcomes.

QOLP-30. LONG-TERM UNMET SUPPORTIVE CARE NEEDS OF TYA CHILDHOOD BRAIN TUMOUR SURVIVORS AND THEIR CAREGIVERS: A CROSS-SECTIONAL SURVEY

2021 ◽  
Vol 23 (Supplement_6) ◽  
pp. vi189-vi189
Author(s):  
Emma Nicklin ◽  
Galina Velikova ◽  
Adam Glaser ◽  
Michelle Kwok-WIlliam ◽  
Miguel Debono ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Supportive Care ◽  
Brain Tumour ◽  
Unmet Needs ◽  
Supportive Care Needs ◽  
Care Needs ◽  
Long Term Follow Up

Abstract INTRODUCTION The supportive care needs of long-term childhood brain tumour survivors, now teenagers and young adults (TYAs), and their caregivers are largely unknown. TYAs are a unique patient cohort with specific challenges and vulnerabilities differing from children or older adults. We aimed to describe their supportive care needs and explore associations between needs and quality of life (QoL).This is the first study to collect quantitative data about needs in this survivorship group. METHODS Participants were recruited from long-term follow-up clinics (in three National Health Service Trusts in England) and online. Participants included childhood brain tumour survivors, ≥ 5 years from diagnosis, currently aged 13-30, and their primary caregivers. Survivors completed the Supportive Care Needs Survey (SCNS) Short-Form and Paediatric Functional Assessment of Cancer Therapy – Brain (Peds-FACT-Br). While caregivers completed the SCNS-Partners and Caregivers (SCNS-P&C) and the Caregiver Quality of Life Index–Cancer (CQOLC). RESULTS In total, 112 individuals (69 survivors/43 caregivers) participated. Survivors reported on average 9.4 (±8.5) unmet needs. Needs were greatest in the psychological domain, with anxiety (60.3%), uncertainty about the future (50.7%) and feeling down and depressed (48.5%) most commonly reported. Caregivers reported on average 12.4 (±12.3) unmet needs. Again, the greatest number of unmet needs were observed in the psychological domain. Many caregivers also reported information needs around financial support/government benefits (42.9%) and possible survivor fertility problems (42.9%). Multivariable linear regression analysis showed that female survivors, unemployed survivors, survivors further away from diagnosis, and single caregivers were more likely to report unmet needs. More unmet needs were significantly associated with poorer QoL in survivors and caregivers. CONCLUSION This research provides leads to improving supportive care and long-term follow-up services. Psychological support appears to be the biggest gap in care. Understanding unmet needs and recognising what services are required is critical to improving quality of long-term survival.

Teenage motherhood and risk of premature death: long-term follow-up in the ONS Longitudinal Study

2011 ◽  
Vol 41 (9) ◽  
pp. 1867-1877 ◽  
Author(s):  
R. T. Webb ◽  
C. E. Marshall ◽  
K. M. Abel
Keyword(s):  
Longitudinal Study ◽  
Social Services ◽  
Reference Group ◽  
Suicide Mortality ◽  
Psychosocial Needs ◽  
Teenage Motherhood ◽  
Long Term Follow Up ◽  
First Time

BackgroundTeenage motherhood is relatively common in the UK, but little is known about related health inequalities in this population. We estimated cause-specific mortality risks over three decades in a nationally representative cohort.MethodWe examined premature mortality in a 1.1% sample of all women who were teenagers in England and Wales during the 1970s, 1980s and 1990s using data from the Office for National Statistics Longitudinal Study (ONS LS). Our primary outcome was suicide. Long-term follow-up to 31 December 2006, to a potential maximum age of 49 years, was achieved through near-complete routine linkage to national mortality records. We created a time-dependent exposure variable, with relative risks estimated according to age when women first experienced motherhood versus a reference group of those currently without children.ResultsWomen who were teenage mothers were around 30% more likely to die prematurely by any cause and almost 60% more likely to die unnaturally, whereas first-time motherhood at mature age conferred lower risk compared to women without children. Teenage motherhood was associated with a more than doubled risk of suicide [mortality rate ratio (MRR) 2.23, 95% confidence interval (CI) 1.30–3.83], and elevated risks of fatal cancer of the cervix and lung were also found. Changing the reference category to first-time mothers at 20 years and above also revealed a significant elevation in risk of accidental death.ConclusionsThe complex psychosocial needs of these women require greater attention from clinicians, public health professionals, social services and policymakers. Their elevated risk of poor health outcomes may persist well beyond the actual teenage motherhood years.

scholarly journals Social support and unmet social needs in life after stroke: a cross-sectional observational study

2019 ◽  
Author(s):  
Sophie Mirabell Lehnerer ◽  
Benjamin Hotter ◽  
Inken Padberg ◽  
Petra Knispel ◽  
Dike Remstedt ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Social Support ◽  
Caregiver Burden ◽  
Unmet Needs ◽  
Social Needs ◽  
Stroke Patients ◽  
Cross Sectional ◽  
Degree Of Disability

Abstract Background: Stroke patients are often affected by long-term disabilities with needs concerning social issues. There is relatively little consideration of social recovery of patients and the support required to return to work, receive social benefits, participate in daily life activities, maintain contact with family and friends and to organize financial affairs. In our study we aimed to investigate if existing tools record social needs adequately. We analyzed the current provision of social support provided in long-term care after stroke and whether unmet social needs were associated with quality of life, caregiver burden, overall function and degree of disability. Methods: Our analysis is part of the Managing Aftercare of Stroke study (MAS-I), a cross-sectional observational study of patient needs 2-3 years after initial stroke. Assessment tools included the Nikolaus-score (social situation), the EuroQoL (quality of life), the German Burden Scale for Family Caregivers (caregiver burden), the modified Rankin Scale (disability / dependence), Stroke Impact Scale (function and degree of disability) and the Stroke Survivor Needs Questionnaire (unmet needs). Results: Overall 57 patients were included in MAS-I, with ten patients classified in urgent need of socio-economic support according to the Nikolaus-score. Patients with lower than normal Nikolaus-score had a higher degree of disability. Thirty percent of all patients had never received professional social support. Social worker contact happened mostly during the stay in acute hospital or rehabilitation institution. Only four patients (11%) reported long-term support after discharge. Apart from social worker contact during acute care, 43% of patients had unmet needs in the long-term aftercare. Forty percent of all patients included in MAS-I were recommended for social work intervention after an in-depth analysis of their situation. Finally, we saw that unmet social needs were associated with lower quality of life and higher caregiver burden. Conclusions: Our data suggest significant unmet needs in social care in long-term stroke patients. Screening tools for unmet social needs such as the Nikolaus-score do not holistically report patients’ needs.

Active Participation of Care Partners in a Physical Activity Intervention alongside People with Stroke: A Feasibility Study

2021 ◽  
pp. e20200035
Author(s):  
Reed Handlery ◽  
Elizabeth Regan ◽  
Allison Foster Lewis ◽  
Chelsea Larsen ◽  
Kaci Handlery ◽  
...  
Keyword(s):  
Physical Activity ◽  
Social Support ◽  
Physical Activity Intervention ◽  
Care Partners ◽  
Before And After ◽  
Physical Activity Adherence ◽  
Ongoing Support ◽  
The Relationship

Purpose: This study investigated the feasibility of a physical activity intervention for people with stroke and their care partners and the role social support plays in physical activity adherence. Method: The study used a single-group, pretest–posttest design with follow-up. Participants were adults with chronic stroke and their care partners. The intervention consisted of 8 weeks of structured, group-based physical activity classes, followed by 19 weeks of self-directed physical activity. Recruitment, adherence, safety, and retention were assessed. Familial social support was assessed before and after the 8-week structured portion and again 19 weeks later. Results: A total of 21 participants (15 people with stroke, 6 care partners), mean (SD) age 67.6 (11.6) years, were recruited; 19 (90.5%) completed the 19-week assessment. No adverse events were experienced during the programme. Attendance during the 8-week portion was better than during the 19-week portion (mean difference 0.95; p < 0.001; 95% CI: 0.71, 1.19 visits/wk). No relationship was found between social support and physical activity adherence ( p > 0.05). Conclusions: Involvement of care partners in a physical activity intervention is feasible and safe. Both people with stroke and their care partners may require ongoing support to participate in long-term physical activity. The relationship between social support and physical activity adherence requires further study.

scholarly journals Long-term unmet supportive care needs of teenage and young adult (TYA) childhood brain tumour survivors and their caregivers: a cross-sectional survey

2021 ◽  
Author(s):  
Emma Nicklin ◽  
Galina Velikova ◽  
Adam Glaser ◽  
Michelle Kwok-Williams ◽  
Miguel Debono ◽  
...  
Keyword(s):  
Supportive Care ◽  
Brain Tumour ◽  
Unmet Needs ◽  
Supportive Care Needs ◽  
Care Needs ◽  
Psychological Domain ◽  
Long Term Follow Up

Abstract Introduction The supportive care needs of long-term childhood brain tumour survivors, now teenagers and young adults (TYAs), and their caregivers are largely unknown. We aimed to describe their supportive care needs and explore associations between needs and quality of life (QoL). Methods Participants were recruited from long-term follow-up clinics (in three NHS Trusts in England) and online. Participants included childhood brain tumour survivors, ≥ 5 years from diagnosis, currently aged 13–30, and their primary caregivers. Survivors completed the Supportive Care Needs Survey (SCNS) Short Form and caregivers the SCNS-Partners & Caregivers, alongside validated QoL questionnaires (Peds-FACT-Br and CQOLC). Results In total, 112 individuals (69 survivors/43 caregivers) participated. Survivors reported on average 9.4 (± 8.5) unmet needs. Needs were greatest in the psychological domain, with anxiety (60.3%), uncertainty about the future (50.7%) and feeling down and depressed (48.5%) most commonly reported. Caregivers reported on average 12.4 (± 12.3) unmet needs. Again, the greatest number of unmet needs was observed in the psychological domain. Many caregivers also reported information needs around financial support/government benefits (42.9%) and possible survivor fertility problems (42.9%). Multivariable linear regression analysis showed that female survivors, unemployed survivors, survivors further away from diagnosis and single caregivers were more likely to report unmet needs. More unmet needs were significantly associated with poorer QoL in survivors and caregivers. Conclusion This research provides leads to improving supportive care and long-term follow-up services. Psychological support represents the biggest gap in care. Understanding unmet needs and recognising what services are required are critical to improving quality of long-term survival.

scholarly journals Predictors of return to work among women with long-term neck/shoulder and/or back pain: A 1-year prospective study

PLoS ONE ◽  
2021 ◽  
Vol 16 (11) ◽  
pp. e0260490
Author(s):  
Mamunur Rashid ◽  
Marja-Leena Kristofferzon ◽  
Annika Nilsson
Keyword(s):  
Social Support ◽  
Back Pain ◽  
Sick Leave ◽  
Return To Work ◽  
Social Insurance ◽  
Behavioral Activities ◽  
Study Participants ◽  
Self Administered Questionnaire

Background Sick leave due to musculoskeletal pain, particularly in the neck/shoulders and back, is one of the major public health problems in Western countries such as Sweden. The aim of this study was to identify predictors of return to work (RTW) among women on sick leave due to long-term neck/shoulder and/or back pain. Methods This was a prospective cohort study with a 1-year follow-up. The study participants were recruited from a local Swedish Social Insurance Agency register and had all been on sick leave for ≥ 1 month due to long-term (≥ 3 months) neck/shoulder and/or back pain. Data on predictors and outcome were collected using a self-administered questionnaire. A total of 208 women aged 23–64 years were included at baseline, and 141 responded at the 1-year follow-up. Cluster analyses were performed to identify one predictor from each cluster for use in the regression model. Results At the 1-year follow-up, 94 of the 141 women had RTW and 47 had not. Women who engaged in more coping through increasing behavioral activities (OR: 1.14, 95% CI: 1.03–1.25) and those who more strongly believed they would return to the same work within 6 months (OR: 1.22, 95% CI: 1.10–1.37) had an increased probability of RTW. Receiving more social support outside work (OR: 0.50, 95% CI: 0.28–0.92) decreased the odds of RTW at the 1-year follow-up. Conclusions Behavioral activities, beliefs about returning to the same work, and social support outside work were predictors of RTW at the 1-year follow-up. Healthcare professionals should consider these predictors in their efforts to prevent prolonged sick leave and to promote RTW in this population.

scholarly journals Associations between workplace bullying and later benefit recipiency among workers with common mental disorders

2021 ◽  
Author(s):  
Camilla Løvvik ◽  
Simon Øverland ◽  
Morten Birkeland Nielsen ◽  
Henrik Børsting Jacobsen ◽  
Silje Endresen Reme
Keyword(s):  
Social Support ◽  
Mental Disorders ◽  
Sickness Absence ◽  
Workplace Bullying ◽  
Common Mental Disorders ◽  
Controlled Trial ◽  
Work Participation ◽  
Randomized Controlled

Abstract Objective In this study, we examined exposure to workplace bullying as a predictor of registry-based benefit recipiency among workers struggling with work participation due to common mental disorders. Further, we examined if the experience of receiving social support moderated the association between workplace bullying and benefit recipiency. Design Secondary analyses of a randomized controlled trial. Patients People struggling with work participation due to common mental disorders (CMD). Methods Study participants (n = 1193) were from a randomized controlled trial (The At Work and Coping trial (AWaC), trial registration http://www.clinicaltrials.gov NCT01146730), and self-reported CMD as a main obstacle for work participation. Participants were at risk of sickness absence, currently on sickness absence or on long-term benefits. Benefit recipiency indicated sickness absence and/or long-term benefits (i.e., disability pension) at 6-month follow-up. Results Of the 1193 participants, 36% reported exposure to workplace bullying. Workplace bullying was significantly associated with benefit recipiency at 6-month follow-up (OR 1.41, CI 1.11–1.79). Social support did not moderate the association between bullying and benefit recipiency. Conclusions The finding that workplace bullying increases the risk of later benefit recipiency suggest that bullying is a significant obstacle for work participation.

OS10.6.A Supportive care needs of TYA childhood brain tumour survivors and their caregivers: a mixed methods study

2021 ◽  
Vol 23 (Supplement_2) ◽  
pp. ii14-ii14
Author(s):  
E Nicklin ◽  
G Velikova ◽  
A Glaser ◽  
N Sarwar ◽  
M Kwok-Williams ◽  
...  
Keyword(s):  
Supportive Care ◽  
Brain Tumour ◽  
Qualitative Data ◽  
Unmet Needs ◽  
Supportive Care Needs ◽  
Structured Interviews ◽  
Care Needs ◽  
Long Term Follow Up

Abstract BACKGROUND Childhood brain tumour survivors and their family caregivers can experience many late effects of treatment including social, cognitive and physical issues. Yet, the supportive care needs of survivors, now teenagers and young adults (TYAs), and their caregivers population are largely unknown. We aimed to gain an in-depth understanding of this populations’ supportive care needs. MATERIAL AND METHODS This study used a convergent mixed methods design including quantitative (survey) and qualitative data (in-depth semi-structured interviews). Participants were recruited from long-term follow-up clinics (in three NHS Trusts in England) and online. Participants included childhood brain tumour survivors, at least five years from diagnosis, currently aged 13–30 and their primary caregivers. The results from quantitative and qualitative data were integrated using a Joint Display Table. RESULTS 136 eligible survivors and caregivers (78 survivors/58 caregivers) were approached to take part in the survey. In total, 112 participants (69 survivors/43 caregivers) completed the survey. A further 22 participants took part in face-to-face semi-structured interviews (11 survivors/11 caregivers). The integrated findings indicate that both survivors and caregivers have unmet needs many years after diagnosis. TYA survivors specifically had high unmet needs in relation to their psychological health, social lives (including romantic relationships), employment, and independence. Caregivers experienced even more unmet needs - including regarding their own psychological well-being and survivors’ financial issues. Survivors further from diagnosis, unemployed survivors and single caregivers were more likely to report unmet needs. Barriers preventing survivors and caregivers accessing supportive services were highlighted, including (but not exclusive to) families not being aware of support available, location of services, and accessibility to information/support. CONCLUSION This research provides leads to improving supportive care and long-term follow-up services. Understanding unmet needs and recognising what services are required is critical to improving survivor and caregiver quality of long-term survival.

Sign in / Sign up

Export Citation Format

Share Document