scholarly journals PAINTING PICTURES: TOWARDS CONNECTING THROUGH IMAGERY IN DIALOGUES WITH YOUNG PEOPLE WITH INTELLECTUAL DISABILITY

2018 ◽  
Vol 9 (4) ◽  
pp. 125-145 ◽  
Author(s):  
Hanna Peels ◽  
Sofie Sergeant
Keyword(s):  
Quality Of Life ◽  
Intellectual Disability ◽  
Young People ◽  
Family Members ◽  
Professional Support ◽  
Dutch Society ◽  
Critical Dialogue

The authors discuss pivotal themes in the use of imagery (visual and verbal) as a method to engage in dialogue with young people with intellectual disability (ID). In their discussion they reflect on co-occurring changes in Dutch society, the nature of caregiving, and the increasing appeals for empowerment for and by people with ID. A critical dialogue is used to analyse experiences with imagery from their previous research, and the possibilities imagery harbours to improve dialogues on quality of life with young people with ID. Through analysis of the critical dialogue, five themes were identified: leitmotiv, ambiguity, choice, revelation, and distance. To conclude, the authors discuss why family members and professional support workers should consider using imagery as a productive methodology.

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 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.

Clozapine in the management of persistent destructive behaviour in a 17-year-old boy with intellectual disability

2020 ◽  
Vol 13 (11) ◽  
pp. e235346
Author(s):  
Navin Dadlani ◽  
Jacqueline Small ◽  
Jean Starling ◽  
Stewart Einfeld
Keyword(s):  
Quality Of Life ◽  
Intellectual Disability ◽  
Young People ◽  
Healthcare Professionals ◽  
Young Patients ◽  
Cost Savings

The management of challenging and refractory destructive behaviour in young patients with intellectual disability (ID) is a major issue faced by families, carers and healthcare professionals who support them. Often, paediatricians and psychiatrists use various behavioural and psychopharmacological approaches, including polypharmacy. We report on one such patient who benefitted greatly from a trial of clozapine, resulting in less aggression, improved quality of life and potentially huge cost savings. We conclude that clozapine may represent a beneficial though seldom-used option for severe, destructive behaviour in young people with ID.

scholarly journals Family perceptions of intellectual disability: Understanding and support in Dar es Salaam

2012 ◽  
Vol 1 (1) ◽  
Author(s):  
Heather M. Aldersey
Keyword(s):  
Quality Of Life ◽  
Intellectual Disability ◽  
Family Support ◽  
Family Members ◽  
Dar Es Salaam ◽  
Family Quality Of Life ◽  
Adults With Intellectual Disabilities ◽  
Family Perceptions ◽  
The Individual

When attempting to understand the construct of intellectual disability in different contexts, speaking to family members in addition to the individual with the disability may provide new insight about understandings of and responses to intellectual disability in society and may help to identify the forms of support that are available or needed to ensure the quality of life of people with disabilities. This article outlines and discusses interviews that were conducted in Dar es Salaam, Tanzania, with family members of children and adults with intellectual disabilities. These interviews explore how families came to understand that their child had an intellectual disability; the availability of family support; and family hopes and dreams for the future, and were a part of a wider exploratory study that gathered insight from individuals with disabilities, families, and other providers of support to explore understandings and perceptions of disability in Dar es Salaam. Understanding family experiences will help researchers, policy makers, non-governmental organisations, and others to identify family strengths and family support needs which can ultimately improve family quality of life and the quality of life of the member with a disability.

scholarly journals HEALTH-RELATED FAMILY QUALITY OF LIFE WHEN A CHILD OR YOUNG PERSON HAS A DISABILITY

2018 ◽  
Vol 9 (4) ◽  
pp. 49-74 ◽  
Author(s):  
Margaret R. Kyrkou
Keyword(s):  
Quality Of Life ◽  
Young People ◽  
Emotional Health ◽  
Family Members ◽  
Young Person ◽  
Family Quality Of Life ◽  
Children And Young People ◽  
People With Disability ◽  
Health Related

Parents of a child or young person with disability face not only the same challenges as parents of typically developing children and young people, but also the extra challenges of supporting the child or young person with disability in such a way as to maximise both their own quality of life (QOL) and family quality of life (FQOL) for all family members. Health-related quality of life (HRQOL) encompasses not only physical health but also mental and emotional health, equally important for FQOL. This article builds on information from previous publications, and illustrates relevant issues and the innovative methods parents, caregivers, and professionals have devised to enhance the HRQOL for children and young people with disability, and to improve FQOL. The author draws upon her personal lived experiences of having two daughters, the eldest an adult with disability, as well as being the medical consultant and manager of a newly created health unit tasked with supporting students with disability, who often have high health needs, in educational settings. The health conditions selected are those that have a major impact, not only on the young person with disability but also on family members. Vignettes, all deidentified true stories, will be included to illustrate the multiple issues faced by children and young people with disability, their families and extended families, and treating clinicians. These stories will hopefully resonate with families in particular.

Identifying Good Group Homes: Qualitative Indicators Using a Quality of Life Framework

2014 ◽  
Vol 52 (5) ◽  
pp. 348-366 ◽  
Author(s):  
Christine Bigby ◽  
Marie Knox ◽  
Julie Beadle-Brown ◽  
Emma Bould
Keyword(s):  
Quality Of Life ◽  
Intellectual Disability ◽  
Qualitative Analysis ◽  
Support Group ◽  
Family Members ◽  
Group Homes ◽  
Life Domains ◽  
Severe Intellectual Disability ◽  
Good Group

Abstract Despite change toward more individualized support, group homes are likely to remain for people with severe intellectual disability. As such, the search continues for ways to determine and maintain the quality of these settings. This article draws on in-depth qualitative analysis of participant observations conducted over 9–12 months in seven group homes for 21 people with a severe and profound level of intellectual disability. It explores the conceptualization of good outcomes and support for this group in terms of their quality of life and staff practices. The qualitative indicators of good outcomes for this group using quality of life domains can be used by auditors, community visitors, funders, advocates, or family members to guide observation and judgements about group homes.

Effects of a Justice-Based Partnership Between Employees and Families in Creating Services and Supports to Enhance Quality of Life Outcomes

2021 ◽  
Vol 59 (2) ◽  
pp. 172-182
Author(s):  
Alice Maniezki ◽  
Vicente Martínez-Tur ◽  
Yolanda Estreder ◽  
Carolina Moliner
Keyword(s):  
Quality Of Life ◽  
Intellectual Disability ◽  
Service Quality ◽  
Family Members ◽  
Life Outcomes ◽  
Quality Of Life Indicators ◽  
And Performance ◽  
Services And Supports ◽  
Positive Effect

Abstract We propose a justice-based partnership between employees and family members as a means to create services and support systems for people with intellectual disability, enhancing quality of life indicators. More specifically, we examine the links from mutual intergroup justice to three outcomes reported by family members: satisfaction with the center, service quality delivered by employees, and performance focused on the quality of life of people with intellectual disability. We used data from 111 centers. In each center, a group of family members (n = 845) and a group of employees (n = 914) participated. Multilevel modeling revealed that mutual intergroup justice (between employees and family members) has a positive effect on satisfaction with the center, perceptions of functional and relational service quality, and performance based on quality of life.

Co-Design and Open Trial of Starship Rescue, a Cognitive Behavior Therapy, Biofeedback, and Game-Based eHealth Intervention to Treat Anxiety in Children and Young People with Long-Term Physical Conditions (Preprint)

2020 ◽  
Author(s):  
Hiran Thabrew ◽  
Karolina Stasiak ◽  
Harshali Kumar ◽  
Tarique Naseem ◽  
Christopher Frampton ◽  
...  
Keyword(s):  
Quality Of Life ◽  
New Zealand ◽  
Young People ◽  
Preliminary Evidence ◽  
Children And Young People ◽  
Physical Conditions ◽  
System Usability Scale ◽  
Ehealth Intervention

BACKGROUND Approximately 10% to 12% of New Zealand children and young people have long-term physical conditions (also known as chronic illnesses) and are more likely to develop psychological problems, particularly anxiety and depression. Delayed treatment leads to worse physical and mental healthcare, school absence, and poorer long-term outcomes. Recently, electronic health (eHealth) interventions, especially those based on the principles of Cognitive Behavior Therapy (CBT), have been shown to be as good as face-to-face therapy. Biofeedback techniques have also been shown to enhance relaxation during the treatment of anxiety. However, these modalities have rarely been combined. Young people with long-term physical conditions have expressed a preference for well-designed and technologically-based support to deal with psychological issues, especially anxiety. OBJECTIVE This study aimed to co-design and evaluate the (i) acceptability and (ii) usability of a CBT and biofeedback-based, 5-module eHealth game called ‘Starship Rescue’ and (iii) to provide preliminary evidence regarding its effectiveness in addressing anxiety and quality of life in young people with long-term physical conditions. METHODS Starship Rescue was co-designed with children and young people from a tertiary hospital in Auckland, New Zealand. Following this, 24 young people aged 10 to 17 years were enrolled in an open trial, during which they were asked to use the game for an 8-week period. Acceptability of the game to all participants was assessed using a brief, open-ended questionnaire, and more detailed feedback was obtained from a subset of 10 participants via semi-structured interviews. Usability was evaluated via the System Usability Scale (SUS) and device-recorded frequency and duration of access on completion of the game. Anxiety levels were measured prior to commencement, on completion of the game, and 3 months later using the Generalized Anxiety Disorder 7-item scale (GAD-7) and Spence Child Anxiety Scales (SCAS), and at the start of each module and at the end of the game using an embedded Likert/visual analog scale. Quality of life was measured prior to commencement and on completion of the game using the Pediatric Quality of Life Scale (PEDS-QL). RESULTS Users gave Starship Rescue an overall rating of 5.9 out of 10 (range 3-10 and a mean score of 71 out of 100 (SD 11.7; min 47.5; max 90) on the System Usability Scale (SUS). The mean time period for use of the game was just over 11-weeks (78.8 days, 13.5 hours, 40 minutes). Significant reductions in anxiety were noted between the start and end of the game on the GAD-7 (-4.6 (p=0.000)), SCAS (-9.6 (p=0.005)), and the Likert/visual analogue scales (-2.4 (p=0.001)). Quality of life also improved on the PedsQL scale (+4.3 (p=0.042)). All changes were sustained at 3-month follow-up. CONCLUSIONS This study provides preliminary evidence for Starship Rescue being an acceptable, usable and effective eHealth intervention for addressing anxiety in young people with long-term physical conditions. Further evaluation is planned via a more formal randomized controlled trial. CLINICALTRIAL Australian New Zealand Clinical Trials Network Registry (ANZCTR): ACTRN12616001253493p;https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=371443 (Archived by WebCite at http://www.webcitation.org/6sYB716lf)

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