Gastrostomy and quality of life in children with intellectual disability: a qualitative study

2020 ◽  
Vol 105 (10) ◽  
pp. 969-974
Author(s):  
Emma J Glasson ◽  
David Forbes ◽  
Madhur Ravikumara ◽  
Lakshmi Nagarajan ◽  
Andrew Wilson ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Intellectual Disability ◽  
Health And Safety ◽  
Well Being ◽  
Family Interactions ◽  
Comprehensive Overview ◽  
Patient Counselling ◽  
Feeding Difficulties ◽  
Children With Intellectual Disability

ObjectiveChildren with intellectual disability and marked feeding difficulties may undergo gastrostomy insertion to assist with their nutritional and medication needs. Use has increased recently for younger children, and it is intended to provide long-term support. This study explored the perceived value of gastrostomy for the quality of life (QOL) of children with intellectual disabilities and their families.MethodsTwenty-one primary caregivers of children with intellectual disability aged 2–18 years participated in semistructured telephone interviews. Data were analysed using directed content analysis, and data were coded to existing QOL domains relevant to children with intellectual disability and their families.ResultsBenefits in each of the child and family QOL domains were represented in the interview data. For children, the impacts of gastrostomy for the physical health domain were predominant, supplemented by experiences of value for emotional well-being, social interactions, leisure activities and independence. For families, gastrostomy was integrated into multiple aspects of QOL relating to family interactions, parenting, resources and supports, health and safety, and advocacy support for disability. Shortcomings related to difficulties with equipment and complications.ConclusionsOur comprehensive overview of the value of gastrostomy for children with intellectual disability and their families was classified within a QOL framework. Gastrostomy was mainly supportive over long time periods across many QOL domains. Findings will be of use to patient counselling and education and the development of family support resources.

Growing Older with an Intellectual Disability

2000 ◽  
Vol 6 (2) ◽  
pp. 57-66
Author(s):  
Lindsay Gething
Keyword(s):  
Quality Of Life ◽  
Intellectual Disability ◽  
Service Provision ◽  
Service Providers ◽  
Family Care ◽  
Well Being ◽  
The United States ◽  
Aged Care ◽  
Policy And Practice

Both the life expectancy and numbers of older people with intellectual disabilities are growing. Until recently, ageing with a disability had not been a major consideration for Australian policy makers and service providers. The situation was similar in countries such as the United States of America and United Kingdom where, unlike aged care, disability policy and practice had not evolved to meet needs. Ageing with long standing disability has now been specified by the Australian government as a priority area. This paper reports results of consultations held with consumers, their organisations, service providers and government in order to explore quality of life and service provision issues for people with long standing disabilities. It reports these issues and uses themes emerging from consultations to structure previously published information specifically related to ageing with an intellectual disability. Seven broad themes are discussed which relate to: life experiences; attitudes, skills and knowledge of consumers; attitudes skills and knowledge of community and service providers, the nature of service provision; the ageing of family care givers; financial security; and ageing in place. It is concluded that disadvantages and barriers experienced throughout life influence well being and quality of life in old age.

More Than Just a Mammogram: Breast Cancer Screening Perspectives of Relatives of Women With Intellectual Disability

2014 ◽  
Vol 52 (6) ◽  
pp. 444-455 ◽  
Author(s):  
Nechama W. Greenwood ◽  
Deborah Dreyfus ◽  
Joanne Wilkinson
Keyword(s):  
Breast Cancer ◽  
Quality Of Life ◽  
Health Care ◽  
Intellectual Disability ◽  
Cancer Screening ◽  
Breast Cancer Screening ◽  
Breast Cancer Mortality ◽  
Family Members ◽  
Well Being

Abstract Women with intellectual disability (ID) have similar rates of breast cancer as the general public, but higher breast cancer mortality and lower rates of regular screening mammography. Screening rates are lowest among women who live with their families. Though women with ID often make decisions in partnership with their relatives, we lack research related to family member perspectives on mammography. We conducted a qualitative study of family members of women with ID, with an interview guide focused on health care decision making and experiences, and breast cancer screening barriers, facilitators, and beliefs as related to their loved ones. Sixteen family members underwent semistructured interviews. Important themes included mammography as a reference point for other social and cultural concerns, such as their loved one's sexuality or what it means to be an adult woman; fear of having to make hard decisions were cancer to be diagnosed acting as a barrier to screening; a focus on quality of life; and desire for quality health care for their loved one, though quality care did not always equate to regular cancer screening. Adults with ID are valued members of their families, and their relatives are invested in their well-being. However, families fear the potentially complicated decisions associated with a cancer diagnosis and may choose to forgo screening due to misinformation and a focus on quality of life. Effective interventions to address disparities in mammography should focus on adults with ID and their families together, and incorporate the family context.

scholarly journals Development of the guideline ‘Challenging behaviour in adults with intellectual disability’

2019 ◽  
Vol 29 (Supplement_4) ◽  
Author(s):  
M Kroezen ◽  
P Embregts ◽  
E Mulder ◽  
C Van Bussel ◽  
J Van der Nagel ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Intellectual Disability ◽  
Negative Impact ◽  
Well Being ◽  
Community Services ◽  
Ethical Framework ◽  
Challenging Behaviour ◽  
Off Label ◽  
Integrated Diagnosis

Abstract Background Challenging Behaviour (CB) is a common problem among people with intellectual disability (ID), leading to a lower quality of life and a negative impact on the emotional well-being of family, staff and fellow clients. Additionally, reduced access to community services and (avoidable) high consumption of specialist care has been reported. This presentation will offer information on the development and content of the Dutch multidisciplinary guideline ‘Challenging behaviour in adults with ID’ that will be published in 2019. Methods The guideline was developed on the basis of the methodologic strategy of the AGREE II instrument. Two systematic reviews were conducted. Additionally, healthcare professionals were surveyed through an online questionnaire, interviews (n = 14) and focus groups (n = 6), and interviews were conducted with adults with ID (n = 20) and their family (n = 16). The draft guideline was reviewed by stakeholders and underwent a practice test. Results The first module of the guideline describes the assessment of (1) the CB itself, (2) potential factors that contribute to the presence or continuation of CB, and (3) the context in which CB occurs. Implementation will lead to a comprehensive, integrated diagnosis and assessment of the CB, the person and context. Module 2 enables health professionals to systematically and transparently select and apply interventions to resolve CB, whilst taking into account multiple factors as well as the specific context in which the CB occurs. Module 3 provides the medical, legal and ethical framework for (off-label) prescription of psychotropics. It explains the process for starting and discontinuing (off-label) psychotropics, the selection of appropriate medication and dosages, and the monitoring and evaluation of effects and side-effects. Conclusions The guideline is based on state of the art scientific and practice-based evidence and will contribute to a more structured approach in the care for people with ID and CB. Key messages Challenging behaviour is a common problem among people with intellectual disability and can have a negative impact on quality of life and the emotional well-being of family, staff and fellow clients. The development of the multidisciplinary guideline ‘Challenging behaviour in adults with ID’ can help to better understand and treat challenging behaviour in people with ID.

A new scale for the measurement of quality of life in children with intellectual disability

2016 ◽  
Vol 53-54 ◽  
pp. 399-410 ◽  
Author(s):  
Laura E. Gómez ◽  
Mª Ángeles Alcedo ◽  
Benito Arias ◽  
Yolanda Fontanil ◽  
Víctor B. Arias ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Intellectual Disability ◽  
Children With Intellectual Disability

Comorbidities and quality of life in children with intellectual disability

2021 ◽  
Author(s):  
Dinah Reddihough ◽  
Helen Leonard ◽  
Peter Jacoby ◽  
Rachel Kim ◽  
Amy Epstein ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Intellectual Disability ◽  
Children With Intellectual Disability

scholarly journals Evaluating Quality of Life in Families With Williams Syndrome Patients

2020 ◽  
Author(s):  
ESTHER MORALEDA ◽  
Mario Arana ◽  
Patricia López
Keyword(s):  
Quality Of Life ◽  
Intellectual Disability ◽  
Williams Syndrome ◽  
Personal Development ◽  
Social Inclusion ◽  
Interpersonal Relations ◽  
Well Being ◽  
Self Determination ◽  
The Impact

Abstract Background: Williams Syndrome is a developmental disorder characterized by a variable intellectual disability. People with Williams Syndrome need the intervention of several clinical and educational specialists throughout their life. However, little is known about the impact produced by this disability in their immediate environment, especially in families. The purpose was to know the level of quality of life described by families with Williams Syndrome.Methods: The sample was made up of 33 families belong to Spanish Williams Syndrome Association who were evaluated using the Kidslife Scale. Theirs children and adolescents were between 4 and 20 years old. Eight main quality of life dimensions were evaluated: emotional well-being, physical well-being, material well-being, personal development, interpersonal relations, social inclusion, self-determination and rightsResults: The obtained data indicated that the degree and presence of intellectual disability themselves did not homogeneously influence people’s quality of life, but many variables could alter their quality of life to a greater or lesser extent. There are no significant differences between quality of life areas but significant differences appeared for level of dependence in the self-determination subarea (p<.05). Conclusions: These results led us to analyse the social and emotional implications for families and their environment.

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