scholarly journals EXPERIENCES AND SUPPORT NEEDS OF CHILDREN WITH BROTHER OR SISTER WITH DISABILITY

2021 ◽  
Vol 7 (1) ◽  
pp. 69-81
Author(s):  
Tiiu Tammemäe ◽  
Lii Lilleoja ◽  
Mari-Liis Valma
Keyword(s):  
Special Needs ◽  
Support Groups ◽  
Family Members ◽  
Well Being ◽  
Growing Up ◽  
Family Doctors ◽  
The Family ◽  
The Disabled ◽  
Need For Support ◽  
To Receive

There are many children with special needs whose siblings play an important role in their lives for a longer time than other family members. Longer life expectancy and the deepening of disabilities bring along a higher need of being taken care of. When the parents grow older it is often the siblings who become the caretakers. Meyer & Vadasy (2007) found that if siblings of children with SEN get proper support and information while growing up, the well-being of siblings with special needs also increases. Relationship with a sibling with special needs influences development of adaptability and self-esteem, this influence can be positive or negative (Burke, 2008). The parents of the children with SEN have many ways to receive information or help from the family – doctors, therapists, consultants, teachers, books, etc. The siblings in their turn usually get their information from the parents. (Conway & Meyer, 2008) Family members of different ages need different information. Therefore, there should be research on what kind of experiences do the siblings of the disabled child need, how their needs and well-being are guaranteed, and what kind of support they need. The aim of this study is to describe the experiences of brothers and sisters with siblings with special needs, try to understand their need for support, and find out the need for support groups and camps.

Families Living with Mental Illness

2016 ◽  
Vol 4 (1) ◽  
Author(s):  
Aditi Rana
Keyword(s):  
Mental Illness ◽  
Mental Health Professionals ◽  
Mentally Ill ◽  
Family Members ◽  
Primary Caregivers ◽  
Well Being ◽  
Structured Interviews ◽  
Indian Context ◽  
The Family ◽  
Partner Research

Mental illness is a growing reality of our times. Usually in a typical Indian family, the parents act as the primary caregivers for the child suffering from mental disorder. For adult sufferers, it can also be siblings or offspring, and  at times even spouse or partner. Research on the experiences of families of mentally ill people has been minimal in the Indian context. This study aims to shift the focus from the mentally ill patients to the suffering of the caregivers and families of the patient keeping in mind the interconnected well being of the family in a collectivist culture. Following a qualitative approach, narratives have been taken from the family members of mentally ill (narratives of 8 families with mentally ill person) and also the mental health professionals (two) through semi structured interviews. The findings suggest that the family members suffer from a significant amount of stress accompanied by burden. Also, they feel secluded from the society and experience a lack of assistance to deal with the mentally ill member of the family.

scholarly journals Growing Up Burney

2020 ◽  
Vol 3 (1) ◽  
Author(s):  
Lorna Clark
Keyword(s):  
Eighteenth Century ◽  
Family Members ◽  
Original Compositions ◽  
Literary Form ◽  
Growing Up ◽  
Frances Burney ◽  
Family Identity ◽  
Reading And Writing ◽  
Writing Practices ◽  
The Family

The pressure of family identity and politics affected more than one generation of Burneys. Beyond Frances Burney, and her intense relationship with her father Charles Burney, were other family members who also felt the pressure to “write & read & be literary.” These tendencies can be seen most clearly in the works of juvenilia preserved in the family archive. A commonplace book bound in vellum has been discovered that preserves more than one hundred poems, mostly original compositions written by family and friends. The activity of commonplacing reflects a community in which reading and writing are valued. Collected by the youngest sister of Frances Burney, they seem to have been copied after she married. The juvenile writings of her nieces and nephews preponderate, whose talents were encouraged, as they give versified expression to their deepest feelings and fears. Literary influences of the Romantic poets can be traced, as the young authors define themselves in relation to these materials. Reflecting a kind of self-fashioning, the commonplace book helps these young writers explore their sense of family identity through literary form. This compilation represents a collective expression of authorship which can inform us about reading and writing practices of women and their families in the eighteenth century.

scholarly journals Vanhuksen oikeus hoivaan ja omaisolettama

Gerontologia ◽  
2017 ◽  
Vol 31 (3) ◽  
pp. 227-242
Author(s):  
Laura Kalliomaa-Puha
Keyword(s):  
Family Members ◽  
Elderly Person ◽  
Social Health ◽  
Legal Responsibility ◽  
Public Authorities ◽  
The Public ◽  
Know How ◽  
The Family ◽  
The Right ◽  
To Receive

Jokaisella vanhuksella on Suomessa yksilöllinen, viime kädessä perustuslaissa taattu, oikeus riittävään hoivaan ja huolenpitoon. Silti tämä oikeus on usein käytännössä riippuvainen siitä, onko vanhalla ihmisellä omaisia tukenaan. Tässä artikkelissa tarkastellaan sitä, miten oikeus hoivaan ja hoitoon taataan lainsäädännössä. Omaisilla ei lain mukaan ole vastuuta hoivan järjestämisestä, mutta silti lainsäädäntö monessa kohdin ikään kuin olettaa omaisten olevan vanhuksen tukena. Vaikka omaiset usein ovatkin tukena, miten perusoikeus hoivaan ja huolenpitoon toteutuu niillä vanhuksilla, joilla ei ole omaisia? Artikkeli nostaa vakavimpana omaisolettaman riskinä esiin ne vanhukset, joilla on omaisia, mutta joiden omaiset eivät osaa tai halua auttaa. Right to care and presumption of family and friends in the Finnish legislation According to Finnish legislation the public authorities must guarantee adequate social, health and medical services for those old persons who cannot obtain means necessary for a life of dignity. Yet in practice this right to receive indispensable subsistence and care often depends on the fact whether the old person happens to have family or friends to help her or him. As if the legislation supposes there are friends and family to help, even though, according to Finnish law, family members do not have legal responsibility to take care of an elderly person. This article elaborates how the right to care is guaranteed in Finnish legislation and what the law says about the responsibilities of the family. Even though most of the relatives do help their elderlies, how is the right to care fulfilled for those old persons who do not have family? Perhaps the elderlies who have family and friends, which do not help or do not know how to, are in the most vulnerable situation.

The Pediatrician, the Disabled Child, and the Family: A Special Relationship

1987 ◽  
Vol 8 (7) ◽  
pp. 195-195
Author(s):  
Robert L. Miller
Keyword(s):  
Down Syndrome ◽  
Special Needs ◽  
Special Relationship ◽  
Long Period ◽  
Grief Reaction ◽  
Ideal Position ◽  
The Family ◽  
The Disabled

Sooner or later, every practicing pediatrician will be asked to care for a baby who will be permanently disabled, such as a child with Down syndrome. To some, the request will be an unwelcome burden, to be dealt with as quickly as possible. To others, however, a new baby with a disability challenges the pediatrician to use all of his or her skills over a long period of time, receiving unexpected rewards in the process. The first opportunity to establish a sound relationship comes when the pediatrician must inform the new parents about the diagnosis. The response to such unexpected news is always shock, denial, and guilt, with a healthy dose of anger. The pediatrician, who by nature is sensitive to the special needs of children and their parents, is in an ideal position to deal with the normal grief reaction.

Cognitive Decline and the Changing Self in Relationship

2015 ◽  
pp. 61-75
Author(s):  
Darby Morhardt ◽  
Marcia Spira
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Cognitive Decline ◽  
Family Member ◽  
Family Members ◽  
Well Being ◽  
Family Roles ◽  
The Family ◽  
Person With Dementia ◽  
The Impact

When a member of a family is diagnosed with Alzheimer's disease, the impact of the disease reverberates throughout the relationships within the family. This paper explores the challenges and strengths within one family as members manage and cope with Alzheimer's disease. The person with dementia and his family members are individually interviewed and each person explores the consequences of the disease on personal well-being as well as the relationships within the family. The family demonstrates how dementia in one family member demands flexibility in family roles as they navigate life through the challenges of living with dementia.

Impact on the family

2021 ◽  
pp. 111-125
Author(s):  
Veronica Dussel ◽  
Barbara Jones
Keyword(s):  
Social Care ◽  
Family Members ◽  
Well Being ◽  
Family Unit ◽  
Health And Social Care ◽  
The Family ◽  
Threatening Condition ◽  
Life Threatening ◽  
Limiting Condition ◽  
The Impact

In this chapter, we will focus on the importance of caring for the family of a child with a life-limiting condition (LLC) or life-threatening condition as a unit, each of the family members being integral to the well-being and care of the others. We recognize that the family unit itself is embedded within a wider context including the health and social care system, and more broadly within its society and culture. We discuss the concept of family, exploring the impact of having a child with an LLC, and how families adjust to this. We then expand on considerations about how to offer effective and timely support and help. We have included parents’ narratives with the aim of adding depth to the discussion, and in recognition of the truth of families’ own experiences.

Impact of family demands and family strengths and capabilities on family well-being and adaptation after critical injury

1998 ◽  
Vol 7 (5) ◽  
pp. 383-392 ◽  
Author(s):  
JS Leske ◽  
MK Jiricka
Keyword(s):  
Problem Solving ◽  
Family Members ◽  
Well Being ◽  
Family Strengths ◽  
Family Adaptation ◽  
Convenience Sample ◽  
The Family ◽  
Family Demands ◽  
Index Family ◽  
Critical Injury

BACKGROUND: Increases in demands on patients' family members that are not reduced by family strengths may contribute to decreases in family adaptation and complicate patients' recovery after trauma. The purpose of this study was to examine family demands (prior stressors and severity of patients' injuries) and family strengths and capabilities (hardiness, resources, coping, and problem-solving communication) associated with outcomes of family well-being and adaptation. METHODS: A multivariate, descriptive design based on the Resiliency Model of Family Stress was used. A convenience sample of family members (N = 51) of adult patients participated within the first 2 days of critical injury. Family demands were measured with the Family Inventory of Life Events and Changes and the Acute Physiology, Age, and Chronic Health Evaluation III. Family strengths were measured with the Family Hardiness Index, Family Inventory of Resources for Management, Family Crisis Oriented Personal Evaluation Scale, and Family Problem Solving Communication Index. Family adaptation outcomes were measured with the Family Well Being Index and Family Adaptation Scale. RESULTS: Increases in family demands were significantly related to decreases in family strengths and family adaptation. Family demands scores accounted for 40% of the variance in family well-being scores. The only significant family strength variable influencing family adaptation was problem-solving communication. CONCLUSIONS: Increases in family demands seem to be an important indicator of the amount of assistance a family may need. Interventions that help mobilize family strengths, such as problem-solving communication, may be effective in promoting the adaptation of families of critically injured patients.

Evaluation of Alzheimer's Australia Vic Memory Lane Cafés

2010 ◽  
Vol 23 (2) ◽  
pp. 246-255 ◽  
Author(s):  
Briony Dow ◽  
Betty Haralambous ◽  
Courtney Hempton ◽  
Susan Hunt ◽  
Diane Calleja
Keyword(s):  
Quality Of Life ◽  
Support Groups ◽  
Social Inclusion ◽  
Service Providers ◽  
Family Members ◽  
Memory Loss ◽  
Well Being ◽  
Human Research Ethics ◽  
People With Dementia

ABSTRACTBackground: This paper describes the evaluation of the Memory Lane Café service in Victoria, Australia. The Alzheimer's Australia Vic Memory Lane Café model aims to provide a social and educational service to people living with dementia and their carers, family members or friends. Dementia is a serious health issue in Australia, with prevalence estimated at 6.5% of people over 65 years of age. Living with dementia has significant social and psychological ramifications, often negatively affecting quality of life. Social support groups can improve quality of life for people living with dementia.Methods: The evaluation included focus groups and surveys of people with dementia and their carers, staff consultation, service provider interviews, and researcher observation. The Melbourne Health Mental Health Human Research Ethics Committee approved the project. Participants included people with dementia (aged 60 to 93 years, previously enrolled in the Alzheimer's Australia Vic's six-week Living With Memory Loss Program), their carers, friends and/or family members, staff working in the Cafés, and service providers with links to the Cafés.Results: This evaluation found that Memory Lane Cafés promote social inclusion, prevent isolation, and improve the social and emotional well-being of attendees. However, Cafés did not meet the needs of all potential attendees.Conclusions: The evaluation recommended that existing Café services be continued and possibilities for extending the Cafés be explored. Based on evaluation outcomes, the Department of Health Victoria is funding four additional pilot programs in café style support services.

scholarly journals Disabled Families: The Impacts of Disability and Care on Family Labour and Poverty in Rural Guatemala

Societies ◽  
2019 ◽  
Vol 9 (4) ◽  
pp. 76 ◽  
Author(s):  
Shaun Grech
Keyword(s):  
Rural Communities ◽  
Research Policy ◽  
Rural Families ◽  
Well Being ◽  
Economic Consequences ◽  
Dynamic Responses ◽  
Special Focus ◽  
The Family ◽  
The Disabled ◽  
And Shifts

An increasing body of literature has started to look at how disability impacts and shifts poverty in the global South in and through a range of areas, including health, education, and livelihoods. However, much of this research is limited to disabled individuals, while qualitative research focusing on and articulating the circumstances, needs and demands of rural families remains scarce, especially research focusing on Latin America. This paper reports on a qualitative study looking at how disability affects family labouring patterns in rural Guatemala, with a special focus on women carers of people with acquired physical impairments, in the bid to contribute to a more inclusive understanding of the disability and poverty relationship and its gendered dimensions. Findings highlight how in rural communities already living in dire poverty, the fragmentation of labour input of the disabled person, costs (notably health care) and intensified collective poverty, push fragile families with no safety nets into a set of dynamic responses in the bid to ensure survival of the family unit. These include harder and longer work patterns, interruption of paid labour, and/or induction into exploitative and perilous labour, not only for women, but also children. These responses are erosive and have severe personal, social, cultural and economic consequences, strengthening a deep, multidimensional, chronic and intergenerational impoverishment, transforming these families into ‘disabled families’, among the poorest of the poor. This paper concludes that research, policy and services need to move beyond the disabled individual to understand and address the needs and demands of whole families, notably women, and safeguard their livelihoods, because ultimately, these are the units that singlehandedly care for and ensure the well-being and survival of disabled people. It is also within these units that disability is constructed, shaped, and can ultimately be understood.

Grandmothers' Diaries: A Glimpse at Daily Lives

2005 ◽  
Vol 60 (4) ◽  
pp. 317-329 ◽  
Author(s):  
Carol M. Musil ◽  
Theresa Standing
Keyword(s):  
Content Analysis ◽  
Time Pressure ◽  
Family Members ◽  
Well Being ◽  
Daily Lives ◽  
Grandmothers Raising Grandchildren ◽  
The Family ◽  
Caregiving Roles ◽  
School Progress

Little information exists about the daily lives of women who are grandmothers, and the differences in daily stresses based on caregiving status to grandchildren. This content analysis examines the stresses of 64 grandmothers as grouped by caregiver status (grandmothers raising grandchildren, grandmothers living in multigeneration homes, non-caregivers to grandchildren) as recorded in three-week diaries. The nature of salient issues and stressful interactions differed by caregiver groups. Grandmothers raising grandchildren reported more stresses related to grandchildren's routines, activities, and school progress, more time pressure, and difficult interactions with grandchildren. The diary entries of grandmothers in multigenerational homes reflected their supplemental role in childcare, and sometimes stressful interactions with other family members. Grandmothers with no routine caregiving to grandchildren reported more involvement with those outside the immediate family. Many general concerns about the well-being of the family represent commonalities in grandmothers despite differences in current caregiving roles to grandchildren.

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