scholarly journals ‘She misses the subtleties and I have to help – help to make the invisible visible’: parents’ role in supporting adults with intellectual and developmental disabilities with intimate relationships

2021 ◽  
Author(s):  
Claire Bates ◽  
Michelle McCarthy ◽  
Karen Milne Skillman ◽  
Nicola Elson ◽  
Siobhan Hunt ◽  
...  
Keyword(s):  
Developmental Disabilities ◽  
Intimate Relationships ◽  
Family Members ◽  
Support Staff ◽  
Intellectual And Developmental Disabilities ◽  
Family Carers ◽  
Potential Partner ◽  
Need Support ◽  
The Family

People with intellectual and developmental disabilities often need support to develop and maintain intimate relationships; however, little is known regarding the role of family carers in this area. Focus groups were conducted with 19 family members to explore the support they provide to people with intellectual and developmental disabilities to find a potential partner and any support they may have to provide to support/develop an existing relationship. Family members provided similar support in this area as support staff, including both practical and emotional support. More needs to be done to support the family members providing this support, such as access to specialist resources and advice, as well as facilitated opportunities to discuss concerns.

Supporting Families Through the Charting the LifeCourse Framework

2019 ◽  
Vol 57 (1) ◽  
pp. 56-65 ◽  
Author(s):  
George S. Gotto ◽  
Michelle C. Reynolds ◽  
Susan B. Palmer ◽  
Danielle F. Chiang
Keyword(s):  
Developmental Disabilities ◽  
Family Member ◽  
Family Support ◽  
Family Members ◽  
Intellectual And Developmental Disabilities ◽  
The Family ◽  
Services And Supports ◽  
Parents And Caregivers ◽  
At Home

Abstract Supporting families who have family members with intellectual and developmental disabilities (IDD) as they move through life is a critical need (Reynolds, Palmer, & Gotto, 2018). The phrase, supporting families, juxtaposes the typical family support paradigm in response to the ongoing shrinkage of federal and state dollars and the recognition that parents and caregivers need services and supports to support their family member with IDD at home (Amado, Stancliffe, McCarron, & McCallion, 2013). Within the family support movement, families are defined in the broadest terms, including those living in the same household, people who are affiliated by birth or choice, and others in the role of helping individuals with IDD succeed in life (Reynolds et al., 2015; Turnbull, Turnbull, Erwin, Soodak, & Shogren, 2015).

Family carers and coercion in the community

2016 ◽  
Author(s):  
Jorun Rugkåsa
Keyword(s):  
Mental Illness ◽  
Family Caregivers ◽  
Family Members ◽  
Welfare States ◽  
Three Dimensions ◽  
Community Treatment ◽  
Family Carers ◽  
The Family ◽  
The World

Family members have always been involved in the care of those with mental illness in most parts of the world. This chapter examines the role of family caregivers in coercive practices in the community and shows that family members may exert influence directly or when engaged in the formal or informal coercive practices of professionals, but may also experience themselves as being coerced. Emphasis is placed on carers’ own experiences. Three dimensions of relevance to coercive practices are outlined. First, carers’ interactions with the family member who is unwell; second, their involvement in community treatment; and third, the role attributed to carers in welfare states.

Empowerment and Resilience in Families of Adults With Intellectual and Developmental Disabilities

2018 ◽  
Vol 56 (5) ◽  
pp. 374-388 ◽  
Author(s):  
Jillian A. Caldwell ◽  
Jennifer L. Jones ◽  
Kami L. Gallus ◽  
Carolyn S. Henry
Keyword(s):  
Developmental Disabilities ◽  
Family Member ◽  
Family Members ◽  
Community Empowerment ◽  
Family Resilience ◽  
Community Living ◽  
Future Research ◽  
Intellectual And Developmental Disabilities ◽  
The Family ◽  
Study Support

Abstract Using the family resilience model, we examined the association between empowerment, family member age, length of institutionalization, and resilience among family members of relatives with intellectual and developmental disabilities (IDD) following deinstitutionalization. Participants included 56 family members whose relatives with IDD recently transitioned to community living. Results strongly indicate empowerment plays a key role in positive family adaptation. Thus, following a relative's move from an institution to the community, empowerment is a promising form of protection that holds potential to increase family resilience. The results of the current study support the family resilience model as a foundation for future research regarding how families navigate significant transitions throughout the lifespan. Implications for practice and policy are provided.

PARENTS AS PARTNERS IN AN INCLUSIVE EDUCATIONAL ENVIRONMENT

2020 ◽  
Vol 1 (7) ◽  
pp. 152-158
Author(s):  
N. M. BURYKINA ◽  
Keyword(s):  
Developmental Disabilities ◽  
Secondary Schools ◽  
Special Needs ◽  
Educational Environment ◽  
Children With Special Needs ◽  
Raising Children ◽  
Philosophical Foundations ◽  
The Family ◽  
Children With Developmental Disabilities

This article discusses the role of the family in the social development of children with special needs in an inclusive educational environment, in connection with which the study addresses a new aspect of the interaction between the teacher and the child’s family, the interaction of the teacher (teacher) and parents of children with developmental disabilities is highlighted in a variety of areas, students in secondary schools or attending kindergartens. The purpose of the study is to assess the role of the family in the adaptation of children with developmental disabilities, studying in secondary schools or attending kindergartens. To achieve this goal, the author defines a range of research tasks: to study the historical and philosophical foundations of the role of the family in raising children with special needs; highlight the role of the family in implementing early intervention programs in secondary schools; substantiate the main stages that any school must go through, striving to create a more fruitful relationship between the school, family and community. The author stated the following results as a scientific novelty: general recommendations have been developed so that parents feel confident, competent and can work more productively together with teachers (educators) when children visit kindergarten groups (classes). As a result of the study, the author came to the conclusion that the process of teaching children with special needs in a comprehensive school is most effective in the interaction of the teacher and the family of the child.

scholarly journals Parental perspective: The role of prostheses and prosthetics services in adjusting to a child’s upper limb difference

2020 ◽  
pp. 1-7
Author(s):  
Tara Sims
Keyword(s):  
Coping Strategies ◽  
Peer Support ◽  
Upper Limb ◽  
Family Members ◽  
Parental Adjustment ◽  
Prosthetic Devices ◽  
The Family ◽  
The Impact

BACKGROUND: The impact of paediatric upper limb difference may extend beyond the child themselves to their parents and other family members. Previous research has found that feelings of shock, numbness and loss are common amongst parents and that peer support can be a buffer against stress. OBJECTIVE: The current study aimed to explore the experiences of parents of children with limb difference, and the role of services and prosthetic devices in these experiences. METHODS: Nine parents of children with limb difference participated in either a group (n= 2) or individual (n= 7) interview. RESULTS: Analysis of the interview transcripts revealed four themes – ‘grief and guilt’, ‘prosthesis as a tool for parental adjustment’, ‘support’ and ‘fun and humour’. CONCLUSIONS: Parents may employ coping strategies to help them adjust to their child’s limb difference, including use of a prosthesis, accessing support from statutory services and peers, and use of fun and humour within the family.

Individual and Family Correlates of Community Living Options Among Adults With Intellectual and Developmental Disabilities

Inclusion ◽  
2017 ◽  
Vol 5 (4) ◽  
pp. 279-292 ◽  
Author(s):  
Meghan M. Burke ◽  
Chung eun Lee ◽  
Moon Y. Chung ◽  
Kristina Rios ◽  
Catherine K. Arnold ◽  
...  
Keyword(s):  
Developmental Disabilities ◽  
Independent Living ◽  
Group Homes ◽  
Community Living ◽  
Intellectual And Developmental Disabilities ◽  
Functional Abilities ◽  
Future Planning ◽  
Adults With Disabilities ◽  
The Family ◽  
Family Home

Abstract With recent policy changes and case-law decisions, there are more opportunities for adults with intellectual and developmental disabilities (IDD) to live independently in inclusive settings. It is necessary to identify malleable correlates of community living options to develop interventions to increase inclusive, independent living. To this end, 546 parents and siblings of adults with IDD responded to a national survey. According to parent and sibling report, adults with IDD were more likely to live outside of the family home when the family engaged in future planning, the individual had more informal supports and more functional abilities and had parents with fewer caregiving abilities. Among the 187 adults with IDD who lived outside of the family home, individuals with more problem behaviors and fewer functional abilities were more likely to live in larger group homes (versus independently with or without supports). Further, when the family engaged in more future planning activities, adults with disabilities were more likely to live in a group home (versus independently). When parents had fewer caregiving abilities, adults with disabilities were more likely to live in bigger group homes (versus independently). Implications for policymakers, practitioners, and research are discussed.

INFLUENCE OF BACTRIO-CARRY IN THE FAMILY ON THE COURSE OF ATOPIC DERMATITIS IN A CHILD

2021 ◽  
pp. 114-119
Author(s):  
Vasileva E.A. ◽  
Kuyarov A.A. ◽  
Kuyarov A.V.
Keyword(s):  
Atopic Dermatitis ◽  
Secondary Infection ◽  
Family Members ◽  
Upper Respiratory Tract ◽  
Epidermal Barrier ◽  
The Family ◽  
Mucous Membranes ◽  
High Degree ◽  
Nose And Throat

The pathogenesis of atopic dermatitis (AD) is complex, and at present a unified concept of the development of the disease has not been formed. At the heart of pathogenesis, there is a complex interaction of numerous factors, such as genetic predisposition, dysfunction of the autonomic nervous system and the epidermal barrier. Previously, it has been proven that a high microbial contamination of the affected areas helps to maintain inflammation and aggravates skin dysfunction as a result of chronic inflammation, and favorable factors appear for the attachment of a secondary infection. However, little attention has been paid to dysfunctions of the epidermal barrier, the role of violations of the quantitative and qualitative composition of the microbiota in the development of AD, and this issue remains relevant at the present time. The aim of this study was to assess the effect of the carrier of bacteria on the mucous membranes of the upper respiratory tract in family members on the course of atopic dermatitis in a child. A bacteriological examination of the mucous membranes of the nose and throat was carried out in 34 children with AD and members of their families (74 people). When examining the mucous membranes of the nose and throat in family members of children with AD, it was found that the microflora isolated from family members in more than half of the cases has an increased potential for pathogenicity with a high degree of contamination (CFU lg 3), which forms an increased bacteriological load on the child. The tendency of bacterial carriage was revealed, contributing to the formation in the family of a permanent persistence of microflora with a high potential for pathogenicity. Asymptomatic carriage of bacteria forms an additional epidemiological load on the child, affects the severity of AD and is a risk factor in the development of secondary infection of the skin.

scholarly journals The Role of Family as A Caregiver in Caring for Family Members that are Suffering from Pulmonary Tuberculosis

Jurnal NERS ◽  
2020 ◽  
Vol 14 (3) ◽  
pp. 362
Author(s):  
Beti Kristinawati ◽  
Annisa Muryadewi ◽  
Ana Dwi Irianti
Keyword(s):  
Pulmonary Tuberculosis ◽  
Successful Treatment ◽  
Family Members ◽  
Nutrition Support ◽  
Depth Information ◽  
Psychological Care ◽  
Tuberculosis Patients ◽  
The Family ◽  
Transmission Of Disease

Introduction: Families have an important role in the successful treatment of people with pulmonary tuberculosis. The purpose of this study was to obtain an overview of the role of the family as a caregiver in caring for family members suffering from pulmonary tuberculosis.Methods: The phenomenological qualitative design was chosen to obtain in-depth information by interviewing thirteen family members who cared for pulmonary tuberculosis patients determined through a purposive technique. Results: The content of Collaizi's analysis produced five themes, namely: 1) Nonpharmacological therapy is given by the family to treat symptomatic pulmonary tuberculosis 2) Efforts to cut transmission was carried out by the family to prevent transmission of disease, 3) Nutrition support provided by families in treating patients, 4) Instrumental support given by families in caring for pulmonary tuberculosis patients, 5) Emotional support given by families in treating pulmonary tuberculosis sufferers.Conclusion: The family provides physical and psychological care to support the successful treatment of pulmonary tuberculosis. A program is recommended to increase family knowledge in caring for family members suffering from pulmonary tuberculosis. Words are sorted alphabetically.

scholarly journals The function of the social networks of families of hospitalized children

2019 ◽  
Vol 23 (4) ◽  
Author(s):  
Rita de Cássia Melão de Morais ◽  
Tania Vignuda de Souza ◽  
Isabel Cristina dos Santos Oliveira ◽  
Juliana Rezende Montenegro Medeiros de Moraes ◽  
Elena Araújo Martinez ◽  
...  
Keyword(s):  
Social Networks ◽  
Social Network ◽  
Family Members ◽  
Main Role ◽  
Hospitalized Children ◽  
Pediatric Hospitalization ◽  
The Social ◽  
The Family ◽  
Main Components

ABSTRACT Objective: To analyze the role of the social network configured by the family/companion and their implications for their stay during the hospitalization of the child in the pediatric hospitalization unit. Method: Qualitative study with ten family members/companions of hospitalized children. Data collection was done through the technique of individual interview, which occurred in the period from February to December 2015. The analysis was thematic, in light of the theoretical reference of "Social Networks" described by Lia Sanicola. Results and discussion: The main role of the social network was emotional and material support, and the main components of this network were: companion, mother, aunt and daughter, as well as nursing team, physician and other family members/companions. Final considerations and implications for the practice: It was verified that the totality of the interviewees was female, however, the husband was the most important member of the social network for the family members involved, since they perform the material/financial and emotional function. In addition, the participants consider that they are responsible for all care to the family and, in the condition in that they are, they understand it as a favor provided by the other members of the network. Identifying the composition of the social networks of family members/companions provides a better targeting of care in order to strengthen the social support received.

The influence of individualistic and collectivistic morality on dementia care choices

2018 ◽  
Vol 26 (7-8) ◽  
pp. 2047-2057 ◽  
Author(s):  
Ingrid Hanssen ◽  
Phuong Thai Minh Tran
Keyword(s):  
Research Question ◽  
Family Members ◽  
Family Care ◽  
Dementia Care ◽  
Family Carers ◽  
Severe Dementia ◽  
Professional Help ◽  
The Balkans ◽  
The Family ◽  
Ethical Approval

Background: If collectivistic-oriented family carers choose professional care for dependents with dementia, they risk being stigmatised as failing their obligation. This may influence dementia care choices. Research question: How may individualistic and collectivistic values influence choices in dementia care? Method: Qualitative design with in-depth interviews with a total of 29 nurses, 13 family members in Norway and the Balkans and 3 Norwegian dementia care coordinators. A hermeneutic content-focused analysis was used. Ethical considerations: Ethical approval was obtained from the Regional Ethics Committee for Research, South-Eastern Norway, and the nursing homes’ leadership. Findings: Family domain reasons why institutionalisation of dependents with dementia was seen as a last resort: obligation towards family members, particularly parents; worry about other family members’ reactions and inability to cope with the care for the person with dementia. Social domain reasons: feelings of shame and stigma regarding dementia, particularly in connection with institutionalisation of family members. Discussion: Children’s obligation towards their parents is an important aspect of the morality of collectivistic societies. Institutionalising parents with dementia may cause feelings of guilt and shame and worry about being stigmatised and ostracised. To avoid blame and rejection, caregiver(s) try to keep the fact that family members have dementia ‘in the family’. The decision to accept professional healthcare for dependents with severe dementia or have them admitted to a geriatric institution was postponed as long as possible. Conclusion: Family care morality may constitute a significant barrier against seeking professional help for persons with dementia, a barrier based on the expectation that the family will care for their old, even when suffering from severe dementia. Hence, stigma and shame may significantly affect the provision of care. Culturally tailored information may encourage family carers to seek professional help before the disruptive influence of the disease makes institutionalisation the only feasible option.

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