scholarly journals Psycho-social impact of developmental dysplasia of the hip and of differential access to early diagnosis and treatment: A narrative study of young adults

2019 ◽  
Vol 7 ◽  
pp. 205031211983601 ◽  
Author(s):  
Tina Samantha Gambling ◽  
Andrew Long
Keyword(s):  
Quality Of Life ◽  
Young Adults ◽  
Early Diagnosis ◽  
Well Being ◽  
Developmental Dysplasia ◽  
The Impact ◽  
Dysplasia Of The Hip ◽  
Over Time ◽  
Differential Access

Objectives: Symptomatic developmental dysplasia of the hip can present in the young, active adult patient and can lead to severe pain and disability at a young age. The overall aim of the study was to deepen the understanding of the impact of developmental dysplasia of the hip on young adults’ quality of life and psycho-social well-being, focusing on how differential access to early diagnosis impacted the trajectory of the disease and treatment options. Methods: We conducted semi-structured interviews and gathered online stories from 97 participants. A narrative and thematic analysis was used to integrate the dataset producing a multi-dimensional view. Results: A narrative plot showing how events unfolded over time was identified for each participant. Two common plots were identified: Plot 1 focused around those participants who received a prompt diagnosis and were treated within 12 months of diagnosis (n = 22) and Plot 2 focused around those who experienced a late/delayed diagnosis (mean = 8 years; range = 12–364 months) (n = 75) and thus delayed treatment. Participants in Plot 2 became more debilitated over time and experienced chronic hip pain for a prolonged period before an accurate diagnosis and/or intervention was made. It was clear from the narratives when pain persists over time, participants’ quality of life and psycho-social well-being were affected. Conclusions: Developmental dysplasia of the hip is an under-recognised condition; more research is needed to develop a clear clinical picture that can be used to alert frontline health professionals to the potential for developmental dysplasia of the hip so that they can promptly diagnose patients and refer them to specialist centres. Patients can also experience a profound impact on their quality of life and psycho-social well-being. Patients actively seek information from support groups about all aspects of their condition. Further research is required to determine the long-term impact of developmental dysplasia of the hip to develop evidence-based information for clinicians and patients.

scholarly journals Determinants of participation and quality of life of young adults with cerebral palsy: longitudinal approach and comparison with the general population – SPARCLE 3 study protocol

BMC Neurology ◽  
2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Catherine Arnaud ◽  
Carine Duffaut ◽  
Jérôme Fauconnier ◽  
Silke Schmidt ◽  
Kate Himmelmann ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Young Adults ◽  
Cerebral Palsy ◽  
Young People ◽  
General Population ◽  
Transition Period ◽  
Well Being ◽  
Personal Factors ◽  
The Impact

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.

scholarly journals The psychosocial benefits of providing non-kin childcare in older adults: A longitudinal study with older New Zealanders

2020 ◽  
Author(s):  
Á Szabó ◽  
Eva Neely ◽  
C Stephens
Keyword(s):  
Quality Of Life ◽  
Older Adults ◽  
Longitudinal Study ◽  
Well Being ◽  
Grandparental Childcare ◽  
Psychosocial Benefits ◽  
The Impact ◽  
Over Time ◽  
New Zealanders

© The Author(s) 2019. Community grandparenting may promote the well-being of older adults. We examined the impact of non-kin and grandparental childcare on quality of life and loneliness using longitudinal data from 2653 older New Zealanders collected over 2 years. Providing both non-kin and grandparental childcare predicted greater self-realisation for women only and was associated with reduced levels of control and autonomy for men. Non-kin childcare was also associated with reduced social loneliness over time independent of gender. Findings suggest that non-kin grandparenting has psychosocial benefits for older adults. Surrogate grandparenting offers promising avenues for those without grandchildren to experience the benefits of grandparenting.

scholarly journals The psychosocial benefits of providing non-kin childcare in older adults: A longitudinal study with older New Zealanders

2021 ◽  
Author(s):  
Agnes Szabo ◽  
Eva Neely ◽  
C Stephens
Keyword(s):  
Quality Of Life ◽  
Older Adults ◽  
Longitudinal Study ◽  
Well Being ◽  
Grandparental Childcare ◽  
Psychosocial Benefits ◽  
The Impact ◽  
Over Time ◽  
New Zealanders

© The Author(s) 2019. Community grandparenting may promote the well-being of older adults. We examined the impact of non-kin and grandparental childcare on quality of life and loneliness using longitudinal data from 2653 older New Zealanders collected over 2 years. Providing both non-kin and grandparental childcare predicted greater self-realisation for women only and was associated with reduced levels of control and autonomy for men. Non-kin childcare was also associated with reduced social loneliness over time independent of gender. Findings suggest that non-kin grandparenting has psychosocial benefits for older adults. Surrogate grandparenting offers promising avenues for those without grandchildren to experience the benefits of grandparenting.

scholarly journals ASSESSMENT OF PSYCHO-SOCIAL IMPACT OF ACNE AMONG YOUNG ADULTS - A CROSS SECTIONAL STUDY AT A TERTIARY CARE HOSPITAL OF RAWALPINDI

2021 ◽  
Vol 71 (4) ◽  
pp. 1171-74
Author(s):  
Zubaida Rashid ◽  
Syed Fawad Mashhadi ◽  
Imtenan Sharif ◽  
Syeda Urooj Zaidi ◽  
Saira Maroof ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Young Adults ◽  
Social Life ◽  
Well Being ◽  
Strong Positive Correlation ◽  
Care Hospital ◽  
Self Perception ◽  
Cross Sectional ◽  
The Impact

Objective: To assess the psychosocial impact of acne and to evaluate the quality of life in relation to severity of symptoms among young adults. Study Design: Cross-sectional – analytical study. Place and Duration of Study: Outpatient Department, Pak Emirates Military Hospital, Rawalpindi, from Sep 2018 to Feb 2019. Methodology: We included 300 individuals visiting the hospital and their quality of life was assessed using Acne quality of life Index questionnaire. Data was analyzed using SPSS-23. Results: Total scores were calculated for three domains of Quality of life in patients with Acne i.e. Self-perception, Emotional well-being and Social life. Out of these three domains, Social Life was most affected by acne (mean score 15.61 ± 7.37out of a total of 30) and Self-Perception was seen to be least affected (mean score 16.90 ± 8.20). There was a strong positive co-relation between the increasing severity of symptoms and impact on Self Perception (r=-0.58, p<0.01), between severity and Impact on Social life (r=-0.581, p<0.01) and between severity of symptoms and Impact on emotional well-being of the patients (r=-0.551, p<0.01). A significant difference was seen between the two genders with reference to the impact on “Social Life”, the meanscore for Males being 13.96 ± 7.55 while that for Females being 17.29 ± 6.81 (p<0.01). Conclusion: Acne has significant impact on the quality of life of patients treated by primary care physicians. The severity of symptoms had strong positive correlation with self-perception, social and emotional domains.

scholarly journals The psychosocial benefits of providing non-kin childcare in older adults: A longitudinal study with older New Zealanders

2020 ◽  
Author(s):  
Á Szabó ◽  
Eva Neely ◽  
C Stephens
Keyword(s):  
Quality Of Life ◽  
Older Adults ◽  
Longitudinal Study ◽  
Well Being ◽  
Grandparental Childcare ◽  
Psychosocial Benefits ◽  
The Impact ◽  
Over Time ◽  
New Zealanders

© The Author(s) 2019. Community grandparenting may promote the well-being of older adults. We examined the impact of non-kin and grandparental childcare on quality of life and loneliness using longitudinal data from 2653 older New Zealanders collected over 2 years. Providing both non-kin and grandparental childcare predicted greater self-realisation for women only and was associated with reduced levels of control and autonomy for men. Non-kin childcare was also associated with reduced social loneliness over time independent of gender. Findings suggest that non-kin grandparenting has psychosocial benefits for older adults. Surrogate grandparenting offers promising avenues for those without grandchildren to experience the benefits of grandparenting.

scholarly journals The indirect effect of a focus group for psoriatic patients on their caregivers

2021 ◽  
Vol 24 (1) ◽  
Author(s):  
Antonella Demma ◽  
Caterina Suitner ◽  
Emilia Ferruzza ◽  
Chiara Nicolini ◽  
Massimo Donini
Keyword(s):  
Quality Of Life ◽  
Focus Group ◽  
Family Caregivers ◽  
Negative Impact ◽  
Depression Scale ◽  
Well Being ◽  
Group Setting ◽  
The Impact ◽  
Over Time

Psoriasis is a chronic skin disease involving not only epidermic damages but also psychological distress for patients and their family caregivers. Little is known about the effects of a psychological support for psoriatic patients on their caregivers’ well-being. The goal of the present study was to investigate the indirect effects of the participation in a dynamic focus group reserved for psoriatic patients on their caregivers in terms of quality of life. The study involved 52 psoriatic patients and 41 family caregivers. Patients’ wellbeing was assessed using the dermatology quality of life index, hospital anxiety and depression scale. The impact of the disease on caregivers was assessed using the family dermatology life quality index (FDLQI). Data were analyzed with linear mixed models. The caregivers of psoriatic patients involved in the psychodynamic focus group reported levels of FDLQI that decreased over time, therefore showing an improvement in their quality of life in relation to the pathology of their relatives; the caregivers of patients who did not participate in the psychodynamic focus group, instead, had levels of FDLQI that were stable over time. The results provide preliminary evidence that the group setting of the Psychodynamic Focus Group may alleviate the negative impact of psychosomatic disease on the caregivers.

The psychosocial benefits of providing non-kin childcare in older adults: A longitudinal study with older New Zealanders

2019 ◽  
pp. 135910531989301
Author(s):  
Ágnes Szabó ◽  
Eva Neely ◽  
Christine Stephens
Keyword(s):  
Quality Of Life ◽  
Older Adults ◽  
Longitudinal Study ◽  
Well Being ◽  
Grandparental Childcare ◽  
Psychosocial Benefits ◽  
The Impact ◽  
Over Time ◽  
New Zealanders

Community grandparenting may promote the well-being of older adults. We examined the impact of non-kin and grandparental childcare on quality of life and loneliness using longitudinal data from 2653 older New Zealanders collected over 2 years. Providing both non-kin and grandparental childcare predicted greater self-realisation for women only and was associated with reduced levels of control and autonomy for men. Non-kin childcare was also associated with reduced social loneliness over time independent of gender. Findings suggest that non-kin grandparenting has psychosocial benefits for older adults. Surrogate grandparenting offers promising avenues for those without grandchildren to experience the benefits of grandparenting.

Exploring the relationship between spiritual well-being and quality of life among patients newly diagnosed with advanced cancer

2014 ◽  
Vol 13 (4) ◽  
pp. 927-935 ◽  
Author(s):  
Mei Bai ◽  
Mark Lazenby ◽  
Sangchoon Jeon ◽  
Jane Dixon ◽  
Ruth McCorkle
Keyword(s):  
Quality Of Life ◽  
Advanced Cancer ◽  
Functional Assessment ◽  
Common Factor ◽  
Well Being ◽  
Newly Diagnosed ◽  
Spiritual Well Being ◽  
The Impact ◽  
Over Time

AbstractObjective:In our context, existential plight refers to heightened concerns about life and death when people are diagnosed with cancer. Although the duration of existential plight has been proposed to be approximately 100 days, evidence from longitudinal studies raises questions about whether the impact of a diagnosis of advanced cancer may require a longer period of adjustment. The purpose of our study was to examine spiritual well-being (SpWB) and quality of life (QoL) as well as their interrelationship in 52 patients with advanced cancer after 100 days since the diagnosis at one and three months post-baseline.Method:The study was designed as a secondary data analysis of a cluster randomized clinical trial involving patients with stage 3 or 4 cancer undergoing treatment. SpWB was measured using the 12-item Functional Assessment of Chronic Illness Therapy–Spiritual Well-Being Scale (FACIT–Sp–12); common factor analyses revealed a three-factor pattern on the FACIT–Sp–12. Quality of life was measured with the Functional Assessment of Cancer Therapy–General (FACT–G). We limited our sample to participants assigned to the control condition (n = 52).Results:SpWB and QoL remained stable between one and three months post-baseline, which were a median of 112 and 183 days after diagnosis, respectively. SpWB was found to be associated with QoL more strongly than physical and emotional well-being. Peace and Meaning each contributed unique variance to QoL, and their relative importance shifted over time. Faith was positively related to QoL initially. This association became insignificant at three months post-baseline.Significance of results:This study underscores the significance of SpWB for people newly diagnosed with advanced cancer, and it highlights the dynamic pattern of Peace, Meaning, and Faith in association with QoL. Our results confirm that patients newly diagnosed with advanced cancer experience an existential crisis, improve and stabilize over time. Future studies with larger samples over a longer period of time are needed to verify these results.

scholarly journals Vision-related quality of life in adults with severe peripheral vision loss: a qualitative interview study

2021 ◽  
Vol 5 (1) ◽  
Author(s):  
Ryan Lange ◽  
Abigail Kumagai ◽  
Sara Weiss ◽  
Katherine B. Zaffke ◽  
Sherry Day ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Contrast Sensitivity ◽  
Qualitative Interviews ◽  
Well Being ◽  
Vision Impairment ◽  
Qualitative Interview Study ◽  
Patient Reported ◽  
Related Quality ◽  
The Impact

Abstract Background Existing patient-reported outcome (PRO) measures may not be relevant to the full range of functional and vision-related quality of life (VR-QOL) concerns of individuals with vision impairment due to severe peripheral field loss (PFL). Measurement of VR-QOL in severe PFL is important in order to determine the effectiveness of vision rehabilitation interventions for this population. The purpose of this study was to characterize the impact of severe PFL due to retinitis pigmentosa (RP) and glaucoma on VR-QOL as the initial phase in the development of a novel PRO measure. Methods Individuals with severe PFL due to RP or glaucoma were recruited from the Kellogg Eye Center and the Association for the Blind and Visually Impaired. Participants completed semi-structured qualitative interviews, the Impact of Vision Impairment (IVI) questionnaire and the RAND 36-Item Health Survey. Interviews were analyzed by two coders using thematic analysis. A matrix analysis was conducted to compare VR-QOL by cause of severe PFL. Sample size was determined by thematic saturation. Results The study included 37 participants (19 RP, 18 glaucoma). Median best-corrected visual acuity for those with RP and glaucoma was 20/40 and 20/27.5, while Pelli-Robson contrast sensitivity was 1.2 log contrast sensitivity (logCS) and 1.1 logCS, respectively. Median domain scores on the IVI (reading, mobility, well-being) ranged from a low of − 0.2 to a high of 0.7 logits in those with RP and from 0.5 to 1.2 logits in those with glaucoma. Qualitative interviews identified six VR-QOL themes relevant across participants with both RP and glaucoma, including activity limitations, driving, emotional well-being, reading, mobility, and social function. VR-QOL concerns were largely consistent among those with severe PFL due to RP and glaucoma. These overarching themes contained content relevant to specific challenges related to severe PFL. Conclusions There are commonly occurring VR-QOL concerns among individuals with severe PFL due to RP and glaucoma. The outlined themes will serve as the basis for development of the Low Vision Severely Constricted Peripheral Eyesight (LV-SCOPE) Questionnaire.

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