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

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.

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

2019 ◽  
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.

scholarly journals Coping with Wolf-Hirschhorn syndrome: quality of life and psychosocial features of family carers

2020 ◽  
Vol 15 (1) ◽  
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.

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

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.

scholarly journals The Quality of Life and Psychosocial Implications of Cancer-Related Lower-Extremity Lymphedema: A Systematic Review of the Literature

2020 ◽  
Vol 9 (10) ◽  
pp. 3200 ◽  
Author(s):  
Catharine Bowman ◽  
Katherine-Ann Piedalue ◽  
Mohamad Baydoun ◽  
Linda E. Carlson
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Lower Extremity ◽  
Health Care Professionals ◽  
Negative Relationship ◽  
Well Being ◽  
Observational Research ◽  
Cross Sectional ◽  
The Impact

Lower-extremity lymphedema (LEL) is a progressive, lifelong complication of cancer that places a substantial burden upon cancer survivors’ quality of life (QOL) and psychosocial well-being. Despite its prevalence, cancer-related LEL is inconsistently diagnosed, treated, and poorly recognized by health care professionals. The purpose of this systematic review was to summarize and appraise the quantitative literature evaluating the impact of cancer-related LEL on patients’ psychosocial well-being and QOL. Three databases (PubMed, PROQuest, and Scopus) were searched for observational research articles published before May 1st, 2020. Twenty-one articles were eligible (cross-sectional (n = 16), prospective cohort designs (n = 3), and retrospective cohort designs (n = 2)). The majority of studies reported a negative relationship between cancer-related LEL and global QOL and/or one or more psychosocial domains including (1) physical and functional; (2) psycho-emotional; (3) social, relational and financial. A greater number of LEL symptoms and higher LEL severity were associated with poorer QOL. Although the evidence to date suggests a negative relationship between cancer-related LEL and patients’ QOL and psychosocial well-being, there is a substantial need for longitudinal analyses to examine the directionality and temporality of this effect in order to inform cancer survivorship care modelling and improve patient outcomes after cancer.

Bladder cancer caregiver quality of life and patient cancer severity.

2020 ◽  
Vol 38 (6_suppl) ◽  
pp. 456-456
Author(s):  
Kathryn Gessner ◽  
Sean McCabe ◽  
Pauline Filippou ◽  
Hannah McCloskey ◽  
Judy Hamad ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Social Support ◽  
Bladder Cancer ◽  
Cancer Patients ◽  
Well Being ◽  
Private Life ◽  
Disease Stage ◽  
Cancer Caregivers ◽  
The Impact

456 Background: Bladder cancer patients’ care is often managed by caregivers, yet caregiving can create a physiologic and emotional burden that compromises the caregivers’ own quality of life (QOL). Our objective was to determine the impact of disease stage on caregiver QOL among a large national cohort of bladder cancer patients. Methods: We performed a cross-sectional survey of bladder cancer caregivers using the Bladder Cancer Advocacy Network Patient Survey Network and Inspire platforms to determine caregiver QOL using the CareGiver QOL questionnaire (CarGOQoL). Caregivers were also queried regarding demographic, socioeconomic and clinical characteristics of their loved one. We present descriptive statistics and a multiple linear regression model to identify factors independently associated with QOL domain score. Results: 132 respondents self-identified as caregivers of patients with bladder cancer. Among respondents, 85% were a spouse, 86% were female, and 97% were white. The mean age was 63 years (range 34 to 72 years) and 73% of respondents completed college. The highest cancer stage for patients was non-invasive in 42%, muscle-invasive in 33%, and metastatic in 24%. On bivariable analysis, stage was associated with leisure and social support but was not associated with global QOL, psychologic or physical well-being, burden, relationship with healthcare, administration and finances, coping, self-esteem or private life. However, on multivariable analysis controlling for age, race, years since diagnosis, and comorbidity, stage was significantly associated with Caregiver QOL (p=0.04). Conclusions: Disease stage significantly impacts QOL among bladder cancer caregivers. As the caregiver is increasingly considered as a stakeholder in survivorship efforts, future interventions should consider targeting social support among caregivers of patients with advanced bladder cancer.

scholarly journals Personality matters: relationship between personality characteristics, spirituality, demoralization, and perceived quality of life in a sample of end-of-life cancer patients

2021 ◽  
Author(s):  
Ada Ghiggia ◽  
Vanni Pierotti ◽  
Valentina Tesio ◽  
Andrea Bovero
Keyword(s):  
Quality Of Life ◽  
End Of Life ◽  
Cancer Patients ◽  
Functional Assessment ◽  
Protective Factor ◽  
Negative Relationship ◽  
Well Being ◽  
Demoralization Scale ◽  
The Impact

Abstract Purpose Personality could be an interesting dimension to explore in end-of-life cancer patients, in order to investigate how personality affects quality of life. Thus, this study aimed to investigate the relationship among personality through the Big Five Inventory (BFI), spirituality, and demoralization and to explore their impact on their quality of life. Methods A sample of 210 end-of-life Italian cancer patients were assessed with the BFI, the Demoralization Scale (DS), the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being (FACIT-SP-12), the Functional Assessment of Cancer Therapy Scale–General Measure (FACT-G), and the Karnofsky performance status. Results Correlational analysis highlighted a significantly negative relationship between extraversion and agreeableness traits and all the demoralization dimensions. On the other side, neuroticism trait was significantly and positively correlated with the Demoralization Scale (p < 0.01). To understand the impact of these variables on quality of life (FACT-G), we performed a hierarchical multiple regression: in the final model, demoralization remained the strongest contributing factor (β =  − 0.509, p < 0.001), followed by neuroticism (β =  − 0.175, p < 0.001), spirituality (β = 0.163, p = 0.015), and Karnofsky index (β = 0.115, p = 0.012). Conclusion Our data underlined how both the neuroticism trait and demoralization are correlated with a worst health status in terminal cancer patients, whereas spirituality is a protective factor. The study of personality may allow to better understand the inner patient’s experience and improve communication between patient and healthcare staff in order to build and apply better-tailored psychological treatment.

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

2014 ◽  
Vol 17 ◽  
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.

scholarly journals Social support and subjective assessment of psychophysical condition, health, and satisfaction with quality of life among women after pregnancy loss

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Grażyna Iwanowicz-Palus ◽  
Mariola Mróz ◽  
Agnieszka Bień ◽  
Krzysztof Jurek
Keyword(s):  
Quality Of Life ◽  
Social Support ◽  
Ectopic Pregnancy ◽  
Pregnancy Loss ◽  
Well Being ◽  
Subjective Assessment ◽  
Cross Sectional ◽  
Obstetric History ◽  
The Impact

Abstract Background The task of modern medicine is not just to heal, but also to improve the patient’s well-being and achieve non-medical goals in the therapy process that enable effective physical, mental and social functioning of the patient. Social support in difficult situations mobilizes an individual’s strength and resources to cope with problems. Research on social support and women’s condition after pregnancy loss reflects a holistic approach to the patient and is important from the perspective of increasing the level of hospital care. Objective The aim of our study was to assess the impact of social support on the psychophysical condition, health, and satisfaction with quality of life among women after miscarriage and ectopic pregnancy. Methods The cross-sectional study was carried out in a group of 500 patients after miscarriage and 110 with ectopic pregnancy, hospitalized in hospitals in Lublin (Poland). The study was conducted with the use of a diagnostic survey, comprising the Berlin Social Support Scales (BSSS) and an original survey questionnaire (psychophysical condition, satisfaction with health and quality of life on a scale of 1–4, sources of support on a scale of 1–10, with 1 being the poorest rating). Results Respondents after miscarriage and those after ectopic pregnancy assigned the highest scores to the degree of perceived available instrumental support (respectively, miscarriage: M = 3.79, EP: M = 3.77). Women after pregnancy loss assigned the highest score to the support obtained from their partner (respectively, miscarriage: M = 9.26, EP: M = 9.23). Social support was significantly correlated with the condition of patients hospitalized as a result of pregnancy loss (p < 0.05). The assessment of psychophysical condition, health, and QoL of the respondents is determined by their education, financial standing, and obstetric history (p < 0.05). Conclusions Women hospitalized due to miscarriage and ectopic pregnancy assigned high scores to the level of perceived available instrumental, emotional, and actually received social support. There is a positive relationship between social support and subjective opinion about psychophysical condition, health and satisfaction with quality of life among women after pregnancy loss. The assessment is determined by sociodemographic factors and the respondents’ obstetric history.

scholarly journals Social Support and Subjective Assessment of Psychophysical Condition, Health, and Satisfaction with Quality of Life among Women after Pregnancy Loss

2020 ◽  
Author(s):  
Grażyna Iwanowicz-Palus ◽  
Mariola Małgorzata Mróz ◽  
Agnieszka Bień
Keyword(s):  
Quality Of Life ◽  
Social Support ◽  
Ectopic Pregnancy ◽  
Pregnancy Loss ◽  
Holistic Approach ◽  
Well Being ◽  
Subjective Assessment ◽  
Modern Medicine ◽  
The Impact

Abstract Background: The task of modern medicine is not just to heal, but also to improve the patient’s well-being and achieve non-medical goals in the therapy process that enable effective physical, mental and social functioning of the patient. Social support in difficult situations mobilizes an individual's strength and resources to cope with problems. Research on social support and women’s condition after pregnancy loss reflects a holistic approach to the patient and is important from the perspective of increasing the level of hospital care. The aim of our study was to assess the impact of social support on the psychophysical condition, health, and satisfaction with quality of life among women after miscarriage and ectopic pregnancy.Methods: The study was carried out among 500 patients after misscariage and 110 with ectopic pregnancy, hospitalized in hospitals in Lublin (Poland). The study was conducted with the use of a diagnostic survey with the application of the Berlin Social Support Scales (BSSS) and original survey questionnaire.Results: Respondents after miscarriage and those after termination of ectopic pregnancy assigned highest scores to the degree of perceived available instrumental support (respectively, miscarriage: M = 3.79, EP: M = 3.77), emotional support (M = 3.68, M = 3.65), and actually received support (M = 3.61, M = 3.57) (p < 0.05). Women after pregnancy loss assigned the highest score to the support obtained from their partner (respectively, miscarriage: M = 9.26, EP: M = 9.23), family (M = 9.09, M = 9.18), midwife (M = 8.70, M = 8.58), and friends (M = 8.49, M = 8.61) (p < 0.05). Social support was significantly correlated with the condition of patients hospitalized as a result of pregnancy loss (p < 0.05).Conclusions: Women hospitalized due to miscarriage and ectopic pregnancy assigned high scores to the level of perceived available instrumental, emotional, and actually received social support. There is a positive relationship between social support and subjective opinion about psychophysical condition, health and satisfaction with quality of life among women after pregnancy loss.

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