Informal caregiver well-being during and after patients’ treatment with adjuvant chemotherapy for colon cancer: a prospective, exploratory study

Abstract Introduction Caring for a significant other during cancer treatment can be demanding. Little is known about the well-being of informal caregivers of patients with colon cancer. This study aims to examine informal caregiver well-being during adjuvant chemotherapy for colon cancer. Material and methods This exploratory longitudinal, prospective study measured the course of informal caregiver burden (Self-Perceived Pressure of Informal Care), distress (Hospital Anxiety and Depression Scale), health-related quality of life (RAND-36), marital satisfaction (Maudsley Marital Questionnaire), social support (Social Support List – Discrepancies), fatigue (Abbreviated Fatigue Questionnaire), and self-esteem (Caregiver Reaction Assessment) before (T0), during (T1), and after (T2) patients’ treatment. Results Baseline data of 60 out of 76 eligible dyads (79%) were analyzed. Mean levels of informal caregiver burden and distress improved significantly over time, as did their health-related quality of life and perceived social support. At baseline, 30% and 26.7% of informal caregivers reported moderate-to-high levels of burden and clinically relevant levels of distress, respectively, which changed to 20% and 18.8% at T2. Informal caregiver burden and distress at baseline were the strongest predictors of informal caregiver burden and distress during and following patients’ treatment, respectively. Conclusion When informal caregivers and patients experience problems before start of adjuvant chemotherapy, problems seem to improve over time. Approximately 20% of informal caregivers remain burdened and distressed after patients’ end of treatment. Paying attention to baseline distress and burden seems indicated, as these were strong predictors of informal caregivers’ well-being during and after treatment.

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Multiple Sclerosis Adult Day Programs and Health-Related Quality of Life of Persons with Multiple Sclerosis and Informal Caregivers

International Journal of MS Care ◽

10.7224/1537-2073.2019-020 ◽

2020 ◽

Vol 22 (4) ◽

pp. 187-192

Author(s):

Joseph M. Gasper ◽

Megan Lewis ◽

Anne Kroeger ◽

Ben Muz ◽

Nicholas LaRocca ◽

...

Keyword(s):

Multiple Sclerosis ◽

Informal Caregivers ◽

Well Being ◽

Care Utilization ◽

Health Related Quality ◽

Related Quality ◽

Health Related ◽

Mental Hrqol

Abstract Background: Multiple sclerosis adult day programs (MSADPs) offer life-enhancing services for individuals and informal caregivers affected by multiple sclerosis (MS), including medical care, rehabilitation therapies, nutrition therapy, cognitive training, tailored education, exercise programs, and social interaction. The purpose of this study was to examine the effects of MSADPs on health-related quality of life (HRQOL) and health care utilization of persons with MS and HRQOL and well-being of informal caregivers. Methods: Using a quasi-experimental design, outcomes between baseline and 1-year follow-up in persons with MS and informal caregivers who used MSADP services and a comparison group of similar persons with MS and caregivers who did not use MSADP services were compared. For persons with MS, outcomes included standardized measures of physical and mental HRQOL and health care utilization. For caregivers, outcomes included physical and mental HRQOL and well-being. Changes in outcomes between baseline and follow-up were examined using propensity score–weighted difference-in-differences regression analysis. Results: For persons with MS, MSADP use had a significant positive effect on 12-Item Short Form Health Survey physical component scores, although the difference was not clinically meaningful. Use of MSADPs did not have effects on any other outcomes for persons with MS or caregivers. Conclusions: Use of MSADPs did not show a clinically meaningful effect on HRQOL for persons with MS or informal caregivers. The MSADPs do not seem to offer sustained benefits to persons with MS or caregivers, but the possibility of initial short-term benefits cannot be ruled out.

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Child self-report and child-parent agreement regarding health-related quality of life under COVID-19 lockdown in the French Grand Est area

10.21203/rs.3.rs-392956/v1 ◽

2021 ◽

Author(s):

Stephanie Bourion-Bedes ◽

Hélène Rousseau ◽

Martine Batt ◽

Pascale Tarquinio ◽

Romain Lebreuilly ◽

...

Keyword(s):

Quality Of Life ◽

Mental Health ◽

Social Support ◽

Age Differences ◽

Well Being ◽

Health Related Quality ◽

Related Quality ◽

Health Related ◽

Sex And Age Differences

Abstract Purpose: Billions of children worldwide were sent under lockdown due to the coronavirus disease. This study aimed to investigate child-reported and parent-rated health-related quality of life among 8- to 18-year-olds and the agreement between the children’s assessments and those of their parents during lockdown.Methods: A cross-sectional study was conducted among French children living in the Grand Est area. An online survey was used to collect data on the children’s sociodemographics, living environments, education and HRQoL. The latter was assessed with KIDSCREEN-27, which consists of five domains. Sex and age differences in parent ratings and child-reported data were analyzed using Kruskal-Wallis tests. Child-parent agreement was analyzed using the intraclass correlation coefficient (ICC).Results: In total, 471 child-parent pairs from 341 households were included. Compared to European norms, children scored lower on all dimensions during the first lockdown: physical well-being (45.9/49.94 EU), psychological well-being (48.8/49.77 EU), parent relations and autonomy (47.7/49.99 EU), social support and peers (36.4/49.94) and school (48.2/50). Significant child-reported sex and age differences were identified for both psychological and physical well-being dimensions. Moderate to good agreement existed between children’s and parents’ ratings on all KIDSCREEN dimensions (ICC ranged from 0.60 to 0.76).Conclusion: The study suggests the need to focus on children’s social support and peers during epidemics and to consider the children’s self-reported HRQoL. Additional research should be conducted to identify ways of minimizing the gap between mental health needs and the services available and to help more children maintain their physical and mental health during the current crisis.

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Life-orientation, Subjective Well-being and Social Support as Predictors of Quality of Life in Patients with End Stage Renal Disease

Bangladesh Journal of Medical Science ◽

10.3329/bjms.v16i3.32845 ◽

2017 ◽

Vol 16 (3) ◽

pp. 346-353

Author(s):

Afsheen Masood ◽

Fatima Kamran ◽

Sumaira Rashid ◽

Shama Mazahir

Keyword(s):

Quality Of Life ◽

Social Support ◽

Well Being ◽

Subjective Well Being ◽

Health Related Quality ◽

Life Orientation ◽

Related Quality ◽

Health Related ◽

End Stage

Background: Psychosocial experiences such as life-orientation, subjective well-being and social support are punitive in determining the health related quality of life of patients in end stage of Chronic Renal Disease; also termed as End Stage Renal Disease (ESRD).Objectives: to investigate the phenomenon of life-orientation, subjective well-being, social support and perceived health related quality of life in patients with end stage renal disease. ESRD patients life orientation, social support and subjective well-being are significant predictors of their perceived quality of life that further determines their disease management and health status.Materials and Methods: This research has been laid out through cross sectional survey research design. The data was collected between the time span of Jan, 2016 to June, 2016. The sample comprised of 200 respondents from both gender, equally distributed within the age range of 50 to 60 years, going through last stage of ESRD and relying on dialysis from at least past one year or more. Indigenously translated WHO QoL, Subjective Wellbeing Scale, multidimensional Social Support Scale, Life Orientation Scale and a demographic information sheet was used to collect the data.Results: The results revealed that life orientation, social support and subjective well-being significantly and positively predicted the health related quality of life; greater social support and higher levels of subjective wellbeing after controlling for the effects of age, gender, income and education were found when the patients carried optimistic and positive life-orientation.Conclusion: The current research findings therefore incriminate preemptive direction in understanding the phenomenon of life-orientation, social support, subjective wellbeing and health related quality of life in patients with last stage ESRD. This further embarks onto highlighting the insightful guidelines for health and clinical psychologists in devising management interventions, targeting the increased subjective well-being, and promotion of optimistic life-orientation in order to facilitate health related quality of life in the patients with end stage renal disease.Bangladesh Journal of Medical Science Vol.16(3) 2017 p.346-353

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A Comprehensive Assessment of Informal Caregivers of Patients in a Primary Healthcare Home-Care Program

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph182111588 ◽

2021 ◽

Vol 18 (21) ◽

pp. 11588

Author(s):

Virginia Rodrigo-Baños ◽

Marta del Moral-Pairada ◽

Luis González-de Paz

Keyword(s):

Quality Of Life ◽

Social Support ◽

Home Care ◽

Primary Healthcare ◽

Informal Caregivers ◽

Care Program ◽

Health Related Quality ◽

Related Quality ◽

Health Related

Studies of the characteristics of informal caregivers and associated factors have focused on care-receiver disease or caregiver social and psychological traits; however, an integral description may provide better understanding of informal caregivers’ problems. A multicenter cross-sectional study in primary healthcare centers was performed in Barcelona (Spain). Participants were a random sample of informal caregivers of patients in a home-care program. Primary outcomes were health-related quality of life and caregiver burden, and related factors were sociodemographic data, clinical and risk factors, social support and social characteristics, use of healthcare services, and care receivers’ status. In total, 104 informal caregivers were included (mean age 68.25 years); 81.73% were female, 54.81% were retired, 58.65% had high comorbidity, and 48.08% of care receivers had severe dependence. Adjusted multivariate regression models showed health-related quality of life and the caregivers’ burden were affected by comorbidity, age, time of care, and dependency of care receiver, while social support and depression also showed relative importance. Aging, chronic diseases, and comorbidity should be included when explaining informal caregivers’ health status and wellbeing. The effectiveness of interventions to support informal caregivers should comprehensively evaluate caregivers when designing programs, centering interventions on informal caregivers and not care receivers’ conditions.

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Health-related quality of life, social support, and caregiver burden between six and 120 months after heart transplantation: a Spanish multicenter cross-sectional study

Clinical Transplantation ◽

10.1111/ctr.12578 ◽

2015 ◽

Vol 29 (9) ◽

pp. 771-780 ◽

Cited By ~ 12

Author(s):

J.F. Delgado ◽

L. Almenar ◽

F. González-Vilchez ◽

J.M. Arizón ◽

M. Gómez ◽

...

Keyword(s):

Quality Of Life ◽

Social Support ◽

Caregiver Burden ◽

Cross Sectional Study ◽

Health Related Quality ◽

Sectional Study ◽

Cross Sectional ◽

Related Quality ◽

Health Related

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Social Support from Developmental Contexts and Adolescent Substance Use and Well-Being: A Comparative Study of Spain and Portugal

The Spanish Journal of Psychology ◽

10.1017/sjp.2017.62 ◽

2017 ◽

Vol 20 ◽

Cited By ~ 2

Author(s):

Antonia Jiménez-Iglesias ◽

Inês Camacho ◽

Francisco Rivera ◽

Carmen Moreno ◽

Margarida Gaspar de Matos

Keyword(s):

Social Support ◽

Substance Use ◽

Family Support ◽

Well Being ◽

Adolescent Substance Use ◽

Health Related Quality ◽

Adolescent Substance ◽

Related Quality ◽

Health Related

AbstractThe aim of this study was to analyse the contribution of social support from family, friend and school (teacher and classmate) contexts in substance use (tobacco and alcohol use) and well-being (life satisfaction and health-related quality of life). Participants were 5,784 Portuguese and 22,610 Spanish adolescents aged 11 to 16 years, from the 2014 edition of the Health Behavior in School-aged Children (HBSC) study in Portugal and Spain. Results showed that for a higher life satisfaction, family (p< .001, partial η2= .032), teacher (p< .001, partial η2= .018) and classmate (p< .001, partial η2= .031) support were important in Portugal, and family (p< .001, partial η2= .056) and friend (p< .001, partial η2= .015) support in Spain. Similarly, for a better health-related quality of life, all the social support variables were relevant in Portugal (family:p< .001, partial η2= .063; teacher:p< .001, partial η2= .032; classmate:p< .001, partial η2= .054; friend:p< .001, partial η2= .034) and in Spain (family:p< .001, partial η2= .054; teacher:p< .001, partial η2= .014; classmate:p< .001, partial η2= .018; friend:p< .001, partial η2= .040). In contrast, only family support (p< .001, partial η2= .014) was relevant in Portugal for tobacco use. Therefore, social support was more relevant for adolescent well-being than for adolescent substance use, and the most relevant source of support was family support, in both Spain and Portugal.

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Health-Related Quality of Life and Social Support in Adolescents with Type 1 Diabetes

The Spanish Journal of Psychology ◽

10.1017/sjp.2014.101 ◽

2014 ◽

Vol 17 ◽

Cited By ~ 4

Author(s):

Luciana Cassarino-Perez ◽

Débora Dalbosco Dell’Aglio

Keyword(s):

Quality Of Life ◽

Social Support ◽

Type 1 Diabetes ◽

Well Being ◽

Health Related Quality ◽

Related Quality ◽

Health Related ◽

The Impact

AbstractThis study investigated the correlations between health-related quality of life and social support in adolescents with type 1 diabetes (T1DM). Participants were 102 adolescents between 12 and 17 years old, who were patients of a healthcare program in the city of Porto Alegre, south of Brazil. Two questionnaires, the KIDSCREEN-52 and the Brazilian version of Social Support Appraisals, were used to evaluate health-related quality of life and social support. Results showed good quality of life and social support levels. Strong correlations were verified between social support and three of the KIDSCREEN-52 dimensions: psychological well-being (r = .63; p < .01); peers and social support (r = .67; p < .01) and school environment (r = .64; p < .01). Analysis of linear regression showed that gender, age and social support are variables associated with health-related quality of life, explaining 52.6% of variance. Results revealed the impact of the disease to young people, and can help to find strategies to improve care in these cases.

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Enhancing Well-Being and Social Connectedness for Māori Elders Through a Peer Education (Tuakana-Teina) Programme: A Cross-Sectional Baseline Study

Frontiers in Public Health ◽

10.3389/fpubh.2021.775545 ◽

2021 ◽

Vol 9 ◽

Author(s):

John G. Oetzel ◽

Stacey Ruru ◽

Yingsha Zhang ◽

Mary Louisa Simpson ◽

Sophie Nock ◽

...

Keyword(s):

Social Support ◽

Cultural Identity ◽

Social Connectedness ◽

Elder Abuse ◽

Peer Education ◽

Well Being ◽

Health Related Quality ◽

Related Quality ◽

Health Related

Background: Māori kaumātua (elders) face stark health and social inequities compared to non-Māori New Zealanders. The tuakana-teina (older sibling-younger sibling) peer education programme is a strengths-based approach to enhance well-being and social connectedness. The purpose of this study is to present the baseline data from this programme and identify correlates of well-being outcomes.Method: Participants included 128 kaumātua who completed a self-report survey about health-related quality of life, spirituality, social connection and loneliness, life satisfaction, cultural identity and connection, elder abuse, health service utilisation and demographics.Findings: Multiple regression models illustrated the following correlates of outcomes: (a) self-rated health: needing more help with daily tasks (β = −0.36) and housing problems (β = –0.17); (b) health-related quality of life: needing more help with daily tasks (β = –0.31), housing problems (β = –0.21), and perceived autonomy (β = 0.19); (c) spiritual well-being: understanding of tikanga (cultural protocols) (β = 0.32) and perceived autonomy (β = 0.23); (d) life satisfaction: social support (β = 0.23), sense of purpose (β = 0.23), cultural identity (β = 0.24), trouble paying bills (β = –0.16), and housing problems (β = –0.16); (e) loneliness: elder abuse (β = 0.27), social support (β = –0.21), and missing pleasure of being with whānau (extended family) (β = 0.19).Conclusions: Key correlates for outcomes centred on social support, housing problems, cultural connection and perceived autonomy. These correlates are largely addressed through the programme where tuakana/peer educators provide support and links to social and health services to teina/peer recipients in need. This study illustrates needs and challenges for kaumātua, whilst the larger programme represents a strengths-based and culturally-centred approach to address health issues related to ageing in an Indigenous population.

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Caregiver burden and proxy-reported outcomes of people without natural speech: a cross-sectional survey study

BMJ Open ◽

10.1136/bmjopen-2021-048789 ◽

2021 ◽

Vol 11 (8) ◽

pp. e048789

Author(s):

Anna Zinkevich ◽

Johanna Sophie Lubasch ◽

Sarah Anna Katharina Uthoff ◽

Jens Boenisch ◽

Stefanie Kalén Sachse ◽

...

Keyword(s):

Quality Of Life ◽

Caregiver Burden ◽

Informal Caregivers ◽

Natural Speech ◽

Insurance Company ◽

Health Related Quality ◽

Proxy Report ◽

Related Quality ◽

Health Related

ObjectiveTo examine interrelations between care-related burden on informal caregivers and their proxy assessments of outcomes in people without natural speech.DesignA cross-sectional survey.SettingData were collected in January 2019 from a postal survey of informal caregivers of people without natural speech who are insured by a large regional health insurance company in the German federal state of Lower Saxony.Participantsn=714 informal caregivers of people without natural speech of all ages and with various underlying disabilities were identified and contacted via the health insurance company. Data from n=165 informal caregivers (26.4%) were obtained.Main outcome measuresCaregiver burden (self-reported, Burden Scale for Family Caregivers), pragmatic communication skills of people without natural speech (proxy report, self-developed), health-related quality of life of people without natural speech (proxy report, DISABKIDS Chronic Generic Measure - DCGM-12) and functioning of people without natural speech (proxy report, WHO Disability Assessment Schedule 2.0).ResultsThe analyses revealed significant associations between caregiver burden on the one hand and both proxy-reported health-related quality of life (b=−0.422; p≤0.001) and functioning (b=0.521; p≤0.001) on the other. Adding caregiver burden to the regression model leads to a substantial increase in explained variance in functioning (R² Model 1=0.349; R² Model 2=0.575) as well as in health-related quality of life (R² Model 1=0.292; R² Model 2=0.460).ConclusionsCaregiver burden should be considered an important determinant when informal caregivers report outcomes on behalf of people without natural speech. Longitudinal studies are recommended to better understand the burdens experienced by caregivers when supporting people without natural speech.Trial registration numberDRKS00013628.

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