scholarly journals The impact of leprosy, podoconiosis and lymphatic filariasis on family quality of life: A qualitative study in Northwest Ethiopia

2020 ◽  
Vol 14 (3) ◽  
pp. e0008173 ◽  
Author(s):  
Anna T. van ‘t Noordende ◽  
Moges Wubie Aycheh ◽  
Alice Schippers
Keyword(s):  
Quality Of Life ◽  
Qualitative Study ◽  
Lymphatic Filariasis ◽  
Northwest Ethiopia ◽  
Family Quality Of Life ◽  
The Impact

scholarly journals Economic assessment of a community-based care package for people with lower limb disorder caused by lymphatic filariasis, podoconiosis and leprosy in Ethiopia

2020 ◽  
Vol 114 (12) ◽  
pp. 1021-1034
Author(s):  
Natalia Hounsome ◽  
Mersha Kinfe ◽  
Maya Semrau ◽  
Oumer Ali ◽  
Abraham Tesfaye ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Lymphatic Filariasis ◽  
Lower Limb ◽  
Life Quality ◽  
Psychosocial Care ◽  
Northwest Ethiopia ◽  
World Health ◽  
Care Package ◽  
The Cost

Abstract We conducted an implementation research study to integrate a holistic package of physical health, mental health and psychosocial care for podoconiosis, lymphatic filariasis and leprosy into routine healthcare in Gusha cluster, Guagusa Shikudad district, northwest Ethiopia. The healthcare package included training patients in lower limb hygiene and skin care and provision of shoes, hygiene supplies and medication. The implementation activities included training events, workshops, awareness raising, self-help groups, supportive supervision, staff secondments and advisory board meetings. The cost of implementing the care package in Gusha cluster, with a population of 30 558 people, was 802 655 Ethiopian birr (ETB) (£48 159) and the cost of delivering care to 235 participants was 204 388 ETB (£12 263), or 870 ETB (£52) per person. There was a 35% decrease in the mean disability scores (measured using the World Health Organization Disability Assessment Schedule 2.0) and a 45% improvement in the dermatology-specific quality of life (measured using the Dermatology Life Quality Index) at the 3-month follow-up compared with baseline. There were reductions in the number of days with symptoms, days off usual activities/work and days with reduced activity due to illness, all of which were statistically significant. Our pilot suggests that integration of the care package into routine healthcare in Ethiopia may be effective in improving health-related quality of life and disability and reducing time out of economic activity due to illness.

scholarly journals Family reported outcomes, an unmet need in the management of a patient's disease: appraisal of the literature

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
R. Shah ◽  
F. M. Ali ◽  
A. Y. Finlay ◽  
M. S. Salek
Keyword(s):  
Quality Of Life ◽  
Family Members ◽  
Unmet Need ◽  
Reliability And Validity ◽  
Chronic Health Condition ◽  
Family Quality Of Life ◽  
Good Reliability ◽  
Huge Impact ◽  
The Impact

Abstract Background A person’s chronic health condition or disability can have a huge impact on the quality of life (QoL) of the whole family, but this important impact is often ignored. This literature review aims to understand the impact of patients' disease on family members across all medical specialities, and appraise existing generic and disease-specific family quality of life (QoL) measures. Methods The databases Medline, EMBASE, CINHAL, ASSIA, PsycINFO and Scopus were searched for original articles in English measuring the impact of health conditions on patients' family members/partner using a valid instrument. Results Of 114 articles screened, 86 met the inclusion criteria. They explored the impact of a relative's disease on 14,661 family members, mostly 'parents' or 'mothers', using 50 different instruments across 18 specialities including neurology, oncology and dermatology, in 33 countries including the USA, China and Australia. These studies revealed a huge impact of patients' illness on family members. An appraisal of family QoL instruments identified 48 instruments, 42 disease/speciality specific and six generic measures. Five of the six generics are aimed at carers of children, people with disability or restricted to chronic disease. The only generic instrument that measures the impact of any condition on family members across all specialities is the Family Reported Outcome Measure (FROM-16). Although most instruments demonstrated good reliability and validity, only 11 reported responsiveness and only one reported the minimal clinically important difference. Conclusions Family members' QoL is greatly impacted by a relative's condition. To support family members, there is a need for a generic tool that offers flexibility and brevity for use in clinical settings across all areas of medicine. FROM-16 could be the tool of choice, provided its robustness is demonstrated with further validation of its psychometric properties.

scholarly journals Impact of Pediatric COVID-19 on Family Health-Related Quality of Life: A Qualitative Study from Latvia

2021 ◽  
Vol 8 ◽  
pp. 2333794X2110123
Author(s):  
Inese Stars ◽  
Liene Smane ◽  
Zanda Pucuka ◽  
Ieva Roge ◽  
Jana Pavare
Keyword(s):  
Quality Of Life ◽  
Qualitative Study ◽  
Family Relationships ◽  
Family Health ◽  
Support Network ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Impact

Information on family health-related quality of life (FHRQoL) among families of children with the coronavirus disease 2019 (COVID-19) is limited. This qualitative study explores the impact of pediatric COVID-19 on FHRQoL from the parents’ perspective. Semi-structured interviews were conducted with parents (n = 20) whose children had tested positive for the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2). Inductive thematic analysis revealed the following 10 themes that represented parents’ perception of FHRQoL while taking care of a child with COVID-19: pediatric COVID-19 as a disease with many unknowns; emotional saturation; internal family relationships in the context of “a new experience”; routine household activities and daily regimen while family is in lockdown; plenty of free time; a wide social support network; social stigma associated with COVID-19; different options for work; savings and debts; challenges with family housing and transport availability. Our results show that parents experience multiple effects of pediatric COVID-19 with regard to FHRQoL.

Quality of Life Following Stroke: A Qualitative Study Across 30 Years

2021 ◽  
Vol 6 (1) ◽  
pp. 151-162
Author(s):  
Steffany M. Chleboun ◽  
Kathryn Brady ◽  
Jennie Zelenak
Keyword(s):  
Quality Of Life ◽  
Grounded Theory ◽  
Qualitative Study ◽  
Family Support ◽  
Resilience Theory ◽  
Grounded Theory Methodology ◽  
Long Period ◽  
The Impact

Much of what we know about stroke is limited to the first 5 years postinjury; however, the effects of having a stroke remain several years, even decades, postinjury, and the impact this has on an individual's quality of life over a long period of time is not completely understood. Purpose The purpose of this study was to understand one woman's experience living with the effects of stroke over multiple decades postinjury and to explore factors that affected her quality of life during this time. Method Using Grounded Theory methodology, data were drawn from 28 years of journals kept by the participant and from semistructured family interviews. Results Four major interacting themes emerged from the data: family support, faith, personality, and journaling. Findings are discussed in the context of resilience theory.

scholarly journals Investigating the impact of headaches on the quality of life of patients with glioblastoma multiforme: a qualitative study

BMJ Open ◽  
2016 ◽  
Vol 6 (11) ◽  
pp. e011616 ◽  
Author(s):  
Samuel Robert Bennett ◽  
Garth Cruickshank ◽  
Antje Lindenmeyer ◽  
Simon Rhys Morris
Keyword(s):  
Quality Of Life ◽  
Glioblastoma Multiforme ◽  
Qualitative Study ◽  
The Impact

scholarly journals FAMILY QUALITY OF LIFE IN PRACTICE: A PRACTICAL APPLICATION OF THE FQOL-2006 SURVEY

2018 ◽  
Vol 9 (4) ◽  
pp. 40-48
Author(s):  
Kierstyn Butler
Keyword(s):  
Quality Of Life ◽  
Service Providers ◽  
Family Quality Of Life ◽  
Practical Application ◽  
The Family ◽  
Master's Thesis ◽  
Research Opportunity ◽  
New Research ◽  
The Impact

As families are increasingly recognized as the primary caregivers for their family members with disabilities, family quality of life (FQOL) research has focused on the impact of disability within the family. This field of research seeks to gain an understanding of the complex challenges and successes families have, with the goal of assisting families in expanding their FQOL. To accomplish this task, the FQOL survey (FQOL-2006) was created. Developed in 2000 and later revised, the FQOL-2006 survey has been used in over 20 countries to explore the perceptions of families, parents, and main caregivers of individuals with intellectual and developmental disabilities. While there has been considerable research using the FQOL-2006 survey, there is limited research that focuses on integrating the survey into practice. This article discusses a possible application of the survey in practical contexts by reflecting on some of the qualitative data collected from my recent FQOL master’s thesis study. Specifically, the article highlights the mutual benefits that service providers and families could receive by integrating the FQOL-2006 survey into service models, as it could allow professionals to establish a framework for assessing each client-family’s overall quality of life, including their greatest supports, strengths, challenges, and needs. This application provides a new research opportunity for the FQOL field for both researchers and professionals.

scholarly journals Parental Stress and Family Quality of Life: Surveying Family Members of Persons with Intellectual Disabilities

2020 ◽  
Vol 17 (23) ◽  
pp. 9007
Author(s):  
Cristina Jenaro ◽  
Noelia Flores ◽  
Belén Gutiérrez-Bermejo ◽  
Vanessa Vega ◽  
Carmen Pérez ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Intellectual Disability ◽  
Parenting Stress ◽  
Parental Stress ◽  
Family Members ◽  
Family Quality Of Life ◽  
Quality Of Life Scale ◽  
The Family ◽  
The Impact

(1) Background. This study assesses the quality of life in families with a member with an intellectual disability using the Family Adjustment and Adaptation Response framework. (2) Methods. The study included 515 Spanish participants whose family members with disabilities range in age from infancy to adulthood. We hypothesized that it is possible to predict parenting stress by paying attention to the meaning families give to themselves and their circumstances while controlling for the impact of other variables such as family capabilities and characteristics of the family member with disabilities. We used the Beach Center Family Quality of Life Scale and the section on Exceptional needs of medical and behavioral support from the Supports Intensity Scale, together with other potential predictors. The subscale on parental stress from the Parenting Stress Index–Short Form was utilized as a criterion measure. (3) Results. Hierarchical multiple regression analysis revealed that 49% of parental stress was predicted by dysfunctional interaction, difficult behaviors, low emotional wellbeing, poor family interaction, as well as kinship as parents, and the severity of both the medical needs and intellectual disability. (4) Conclusions. The stress experienced by those families is mostly predicted by the meaning they give to themselves and their circumstances. Implications of these findings for service delivery are discussed.

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