P21: The influence of physical well-being, family and social support on the psychological and emotional quality of life dimensions of young people with HIV

Abstract Background Effective inclusion in society for young people with disabilities is increasingly seen as generating opportunities for self-development, and improving well-being. However, significant barriers remain in the vast majority of activities meaningful for young adults. Research argues that various personal (disabilities, health) and environmental (access to the resources needed, accessible environment, discrimination, lack of personal economic independence) factors contribute to limited participation. However, previous studies conducted in young people with cerebral palsy (CP) mainly investigated the transition period to adulthood, and did not fully consider the whole range of impairment severity profiles or environmental barriers. In this study, we will use the follow-up of the SPARCLE cohort and a comparison group from the general population (1) to investigate the impact of the environment on participation and quality of life of young adults with CP, (2) to determine predictors of a successful young adulthood in educational, professional, health and social fields, (3) to compare quality of life and frequency of participation in social, work and recreational activities with the general population, (4) to document on participation and quality of life in those with severe disabilities. Methods The SPARCLE3 study has a combined longitudinal and cross-sectional design. Young adults with CP aged 22 to 27 years in 6 European regions previously enrolled in the SPARCLE cohort or newly recruited will be invited to self-complete a comprehensive set of questionnaires exploring participation (daily life and discretionary activities), health-related quality of life, body function, personal factors (health, personal resources), and contextual factors (availability of needed environmental items, family environment, services provision) during home visits supervised by trained researchers. Proxy-reports or adapted questionnaires will be used for those with the most severe impairments. The recruitment of a large group from the general population (online survey) will enable to identify life areas where the discrepancies between young people with CP and their able-bodied peers are the most significant. Discussion This study will help identify to what extent disabilities and barriers in environment negatively affect participation and quality of life, and how previous valued experiences during childhood or adolescence might modulate these effects.

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Formerly Detained Adolescents’ Narratives: On the Interplay between Quality of Life and Desistance

International Journal of Offender Therapy and Comparative Criminology ◽

10.1177/0306624x211023922 ◽

2021 ◽

pp. 0306624X2110239

Author(s):

Nele Van Hecke ◽

Florien Meulewaeter ◽

Wouter Vanderplasschen ◽

Lore Van Damme ◽

Jan Naert ◽

...

Keyword(s):

Quality Of Life ◽

Social Support ◽

Young People ◽

Good Life ◽

Individual Responsibility ◽

Barriers And Opportunities ◽

Ambivalent Relationship ◽

Desistance From Crime ◽

Good Lives

In recent years, a growing trend to consider strengths and protective factors in studies on desistance from crime has emerged. The present study explores three formerly detained adolescents’ narratives, aiming to tease out how Quality of Life (QoL) and desistance interact in pathways towards a “better life.” The narratives suggest that the journey towards a better life is highly individual, and may unfold via multiple pathways characterized by an ambivalent relationship between QoL and desistance. Alongside the importance of individual aspects and social support, societal barriers and opportunities play a significant role in creating new chances to re-build a life and prosocial identities. This reflects earlier findings that desistance is not an individual responsibility. It is essential to support young people to overcome societal barriers that impede participation in society and living a good life. This research adds to growing evidence of strengths-based approaches to rehabilitation, such as the Good Lives Model (GLM).

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Quality of life and Social Support Among Diagnose Bipolar Patients

10.53350/pjmhs21155932 ◽

2021 ◽

Vol 15 (5) ◽

pp. 932-935

Author(s):

M Adnan ◽

T Khan ◽

B Razzaq ◽

R Ghaffar ◽

S Batool ◽

...

Keyword(s):

Quality Of Life ◽

Social Support ◽

Psychiatric Treatment ◽

Bipolar Affective Disorder ◽

Well Being ◽

Recovery Phase ◽

Cross Sectional ◽

Quality Of Life Scale ◽

Bipolar Patients

Aim: To ascertain the relationship between quality of life and social support in bipolar patients who have been diagnosed. STUDY DESIGN: cross-sectional research design Place and duration of the study: The research was performed impatiently on the Sheikh Zayed Medical College, Rahim Yar Khan at the Department of Psychiatry and Behavioral Sciences, which ran from January 2018 to July of 2019. Method: Data was retrieved from 100 patients, with diagnosed patients of bipolar affective disorder. Quality of life and social support were assessed by quality of life scale (QOLS) developed by Burckhardt and Berline social support scale (BSSS) developed by Berline. Results: Research claims a close relationship between the presence of such things as quality of life and social help for people with Bipolar Disorder. Conclusion: Bipolar is linked to inadequate health and quality of life and social isolation, mostly due to ineffective social skills. Social support is critical to emotional stability and quality of life. It may help patients deal with difficulties and reduce depression and help in both the recovery phase and positive results of psychiatric treatment. What is currently being sought to be learned is how social care has an impact on the level of well-being for bipolar patients. Keywords: Quality of life, bipolar, validation, generalization

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A Systematic Literature Review and Head-to-Head Comparison of Social Support and Social Constraint in Relation to the Psychological Functioning of Cancer Survivors

Annals of Behavioral Medicine ◽

10.1093/abm/kaz037 ◽

2019 ◽

Vol 54 (3) ◽

pp. 176-192 ◽

Cited By ~ 1

Author(s):

Jessica N Rivera Rivera ◽

Jessica L Burris

Keyword(s):

Quality Of Life ◽

Social Support ◽

Literature Review ◽

Cancer Survivors ◽

Social Functioning ◽

Psychological Functioning ◽

Well Being ◽

Social Constraint ◽

Multidimensional Concept

Abstract Background Quality of life is a multidimensional concept that includes perceptions of one’s physical, psychological, social, and spiritual functioning, all of which are theorized to be interdependent. The focus of this study is social functioning, which itself is a multidimensional concept that includes social support and social constraint among other things. In cancer survivors, social support receives most of the research attention, but social constraint may have a stronger influence on quality of life. Purpose This systematic literature review evaluates which aspect of social functioning—social support or social constraint—has a stronger relationship with the psychological functioning of cancer survivors. Methods The Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines were followed in the identification and review of 32 independent records. Multiple measures of social support and social constraint were used across studies, with most having adequate psychometric properties. Psychological outcomes were divided into (a) general distress, (b) cancer-specific distress, (c) general well-being, and (d) cancer-specific well-being. Results For general and cancer-specific distress, social constraint exhibited a larger association with distress than social support. Similarly, for general well-being, most studies reported a stronger association with social constraint than social support. For cancer-specific well-being, the opposite was true such that associations were stronger for social support than social constraint. Conclusions Results highlight the importance of considering social constraint when examining quality-of-life outcomes like psychological distress and well-being. Findings support social constraint as a target in interventions to reduce cancer survivors’ distress, while social support could be considered in attempts to promote cancer-specific well-being.

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Quality of life in older adults receiving hemodialysis: a qualitative study

Quality of Life Research ◽

10.1007/s11136-019-02349-9 ◽

2019 ◽

Vol 29 (3) ◽

pp. 655-663 ◽

Cited By ~ 1

Author(s):

Rasheeda K. Hall ◽

Michael P. Cary ◽

Tiffany R. Washington ◽

Cathleen S. Colón-Emeric

Keyword(s):

Quality Of Life ◽

Social Support ◽

Older Adults ◽

Qualitative Study ◽

Symptom Control ◽

Well Being ◽

World Health ◽

World Health Organization Quality ◽

Frailty Status

Abstract Purpose Patient priorities for quality of life change with age. We conducted a qualitative study to identify quality of life themes of importance to older adults receiving dialysis and the extent to which these are represented in existing quality of life instruments. Methods We conducted semi-structured interviews with 12 adults aged ≥ 75 years receiving hemodialysis to elicit participant perspectives on what matters most to them in life. We used framework analysis methodology to process interview transcripts (coding, charting, and mapping), identify major themes, and compare these themes by participant frailty status. We examined for representation of our study’s subthemes in the Kidney Disease Quality of Life (KDQOL-36) and the World Health Organization Quality of Life for Older Adults (WHOQOL-OLD) instruments. Results Among the 12 participants, average age was 81 (4.2) years, 7 African-American, 6 women, and 6 met frailty criteria. We identified two major quality of life themes: (1) having physical well-being (subthemes: being able to do things independently, having symptom control, maintaining physical health, and being alive) and (2) having social support (subthemes: having practical social support, emotional social support, and socialization). Perspectives on the subthemes often varied by frailty status. For example, being alive meant surviving from day-to-day for frail participants, but included a desire for new life experiences for non-frail participants. The majority of the subthemes did not correspond with domains in the KDQOL-36 and WHOQOL-OLD instruments. Conclusion Novel instruments are likely needed to elicit the dominant themes of having physical well-being and having social support identified by older adults receiving dialysis.

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Quality of Life in Adolescents With Type 1 Diabetes Who Participate in Diabetes Camp

The Journal of School Nursing ◽

10.1177/10598405060220010901 ◽

2006 ◽

Vol 22 (1) ◽

pp. 53-58 ◽

Cited By ~ 29

Author(s):

Ruth Cheung ◽

Virginia Young Cureton ◽

Daryl L. Canham

Keyword(s):

Quality Of Life ◽

Social Support ◽

Type 1 Diabetes ◽

Well Being ◽

Area Of Interest ◽

Related Quality ◽

Complex Diabetes ◽

Diabetes Camp

Quality of life in adolescents with Type 1 diabetes is a growing area of interest in pediatric research. The complex diabetes regimen imposes challenges for an adolescent. Adolescents diagnosed with diabetes are a group that appears to be at risk for having a poor health-related quality of life. Although research supports the positive relationship of social support and well-being in adolescents, there are few studies discussing quality of life in adolescents that are based on the factor of social support. This study compared the quality of life in adolescents with Type 1 diabetes who have attended at least one diabetes camp to the quality of life of those who have never attended diabetes camp. Results provided evidence of the value of social support.

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Development of the Sport Mental Health Continuum—Short Form (Sport MHC-SF)

Journal of Clinical Sport Psychology ◽

10.1123/jcsp.2017-0057 ◽

2019 ◽

Vol 13 (4) ◽

pp. 593-608 ◽

Cited By ~ 5

Author(s):

Brian J. Foster ◽

Graig M. Chow

Keyword(s):

Quality Of Life ◽

Mental Health ◽

Convergent Validity ◽

Short Form ◽

Measurement Instrument ◽

Collegiate Athletes ◽

Well Being ◽

Emotional Quality ◽

Context Specific

Well-being research conducted in competitive athletics has been marred by the lack of a context-specific measurement instrument. The purpose of this study was to adapt the Mental Health Continuum – Short Form (MHC-SF) to create a sport-specific well-being instrument, the Sport Mental Health Continuum—Short Form (Sport MHC-SF), and test its initial psychometric properties. Participants were 287 collegiate athletes from a variety of sports. Confirmatory factor analysis (CFA) determined a three-factor structure of sport well-being, consisting of subjective, psychological, and social factors, as the model of best fit. Internal consistency reliabilities of the subscales exceeded .88. Moderate positive correlations were found between Sport MHC-SF subscales and quality of life indices, notably physical and emotional quality of life, demonstrating convergent validity. The Sport MHC-SF will facilitate empirical research by providing a more accurate and comprehensive measurement of well-being for an athletic population.

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Coping with Wolf-Hirschhorn Syndrome: quality of life and psychosocial features of family carers

10.21203/rs.2.17095/v2 ◽

2020 ◽

Author(s):

Sarah Berrocoso ◽

Imanol Amayra ◽

Esther Lázaro ◽

Oscar Martínez ◽

Juan Francisco López-Paz ◽

...

Keyword(s):

Quality Of Life ◽

Social Support ◽

Support Groups ◽

Coping Styles ◽

Negative Relationship ◽

Well Being ◽

Postnatal Growth ◽

Support Network ◽

The Impact

Abstract Background : Wolf-Hirschhorn Syndrome (WHS) is a rare, congenital disease characterized by a distinctive facial phenotype, seizures, intellectual disability and developmental delay, and pre and postnatal growth requiring lifelong care. The psychosocial status of the family caregivers of children diagnosed with WHS is unknown. This study aims to characterize the sociodemographic and psychosocial profile of WHS caregivers and analyze how these variables impact their quality of life (QoL) and well-being. Results: The sociodemographic and clinical profile of 22 Spanish caregivers of children with WHS and the characteristics of those affected have been described. Significant relationships were found between sociodemographic and psychosocial characteristics among caregivers. The impact on the parents' QoL and negative relationship with the symptomatology were assessed. The use of engagement strategies such as problem focused coping was associated with improved psychological QoL and social support. Conclusions: WHS caregivers share similarities in their profile and needs with caregivers of children with other rare diseases. Pychosocial support groups involving parents caring for children with the same disease could improve caregivers’ well-being and QoL by strengthening their social support network and using positive coping styles. Keywords: Wolf-Hirschhorn syndrome; 4p deletion; caregivers; quality of life; coping; depression; social support; spirituality.

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The influence of social support on COPD outcomes mediated by depression

PLoS ONE ◽

10.1371/journal.pone.0245478 ◽

2021 ◽

Vol 16 (3) ◽

pp. e0245478

Author(s):

Leonard Turnier ◽

Michelle Eakin ◽

Han Woo ◽

Mark Dransfield ◽

Trisha Parekh ◽

...

Keyword(s):

Quality Of Life ◽

Social Support ◽

Depressive Symptoms ◽

Functional Status ◽

Perceived Social Support ◽

Well Being ◽

Institutional Review Boards ◽

Longitudinal Analyses ◽

Cross Sectional

Background The purpose of this study was to explore the association between perceived social support and COPD outcomes and to determine whether the associations are mediated by depressive symptoms. Methods Subjects with COPD who were enrolled as part of SPIROMICS were included in this analysis. Questionnaires relating to quality of life, symptom burden, and functional status were administered at annual clinic visits for over a 3 year period. In both cross-sectional and longitudinal analyses, we examined the association of social support as measured by the FACIT-F with COPD outcomes. Cross sectional analyses used multivariable linear or logistic regression, adjusting for covariates. For longitudinal analyses, generalized linear mixed models with random intercepts were used. Models were adjusted with and without depressive symptoms and mediation analyses performed. Results Of the 1831 subjects with COPD, 1779 completed the FACIT- F questionnaire. In adjusted cross-sectional analysis without depressive symptoms, higher perceived social support was associated with better quality of life, well-being, 6 minute walk distance, and less dyspnea. When also adjusting for depressive symptoms, all associations between social support and COPD outcomes were attenuated and no longer statistically significant. Mediation analysis suggested that depressive symptoms explained the majority (> = 85%) of the association between social support and measured COPD outcomes. Results of the longitudinal analysis were consistent with the cross-sectional analyses. There was no association between social support and odds of exacerbations. Conclusion Higher social support was associated with better COPD outcomes across several measures of morbidity including quality of life, respiratory symptoms, and functional status. In addition, these associations were largely attenuated when accounting for depressive symptoms suggesting that the beneficial association of social support with COPD outcomes may be largely mediated by the association between social support and depression. Trial registration SPIROMICS was approved by Institutional Review Boards at each center and all participants provided written informed consent (clinicaltrials.gov: NCT01969344).

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Emotional well-being and social support as important factors affecting the quality of life of parents of a child with cerebral palsy

Serviço Social e Saúde ◽

10.20396/sss.v18i0.8656805 ◽

2019 ◽

Vol 18 ◽

pp. e019002

Author(s):

Katarína Molnárová Letovancová ◽

Miriam Slaná ◽

Michaela Hromková

Keyword(s):

Quality Of Life ◽

Social Support ◽

Cerebral Palsy ◽

Well Being ◽

Average Score ◽

Family Quality Of Life ◽

Life Questionnaire ◽

Quality Of Life Scale ◽

Children With Cerebral Palsy

The birth of a child with cerebral palsy is an enormous challenge for the parents which has a direct impact on their quality of life. Therefore, we believe it is important to pay attention to this topic. To that end, we conducted research on the quality of life of parents of children with cerebral palsy in 2018. To achieve our goal, we applied quantitative research strategy and used a valid research tool, i.e. a standardized quality of life questionnaire – Family Quality of Life Scale ("FQOL"). The average score reached by respondents was 94.0918 points which indicates a higher quality of life in respondents than expected. The evaluation of the average score for each dimension of the scale showed that respondents scored the lowest in the "Emotional Well-Being" dimension (13.2551 points) and "Social Support" (15.6429 points). The research further confirmed that there were statistically significant differences in the quality of life of respondents depending on their age (t = -2.341, p = 0.021), marital status (F = 3.476, p = 0.019) and the territorial region (χ2 = 15.39, p = 0.031). A statistically significant relationship between the quality of life of respondents and the age of the child with cerebral palsy (0.288 **, p = 0.004) was confirmed. Despite a relatively high score that indicated a higher quality of life in respondents, the research identified two areas in which parents of children with cerebral palsy had a lower quality of life, namely, their emotional well-being and social support.

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