scholarly journals Challenges of family caregivers of children with special needs of multiple, complex and continuing care at home

2019 ◽  
Vol 23 (1) ◽  
Author(s):  
Beatriz Caroline Dias ◽  
Sueli MutsumiTsukuda Ichisato ◽  
Maria Angelica Marchetti ◽  
Eliane Tatsch Neves ◽  
Ieda Harumi Higarashi ◽  
...  
Keyword(s):  
Special Needs ◽  
Family Caregivers ◽  
Health Care Services ◽  
Care Practice ◽  
Continuing Care ◽  
Children With Special Needs ◽  
Care Services ◽  
Primary Health Care Services ◽  
Care At Home ◽  
At Home

ABSTRACT Objective: To describe the challenges of family caregivers of children with special needs of multiple, complex and continuing care at home. Methods: Qualitative study based on the theoretical framework of the Patient and Family-Centerd Care (PFCC). We interviewed eleven family caregivers from 13 children enrolled in a special school in the Brazilian city of Maringá (PR). The data were subject to content analysis, thematic modality. Results: The main challenges identified are the lack of preparation for home care, the difficulty of access and follow-up in Primary Health Care services, and the difficulty of including the child in social interaction. However, caregivers react positively to these adversities. Conclusions and implications for practice: The nurses need the necessary training to transcend hospital technical care and to develop a care practice based on family-centerd care, considering this as a protagonist, including it in the process for the quality of life of these children.

scholarly journals Family dynamics and social network of families of children with special needs for complex/continuous cares

2020 ◽  
Vol 41 ◽  
Author(s):  
Beatriz Caroline Dias ◽  
Sonia Silva Marcon ◽  
Pamela dos Reis ◽  
Iven Giovanna Trindade Lino ◽  
Aline Cristiane Cavicchioli Okido ◽  
...  
Keyword(s):  
Special Needs ◽  
Family Dynamics ◽  
Support Network ◽  
Functional Evaluation ◽  
Children With Special Needs ◽  
Continuous Care ◽  
The Family ◽  
Family Routine ◽  
Care At Home ◽  
At Home

ABSTRACT: Objective: To describe the family dynamics and the social support network for families of children with special needs of multiple, complex and continuous care. Methods: A descriptive study of a qualitative approach, carried out in Maringá - PR, having as theoretical and methodological reference the Calgary Model of Family Assessment (CMFA). Data was collected through semi-structured audio-video interviews, carried out in the homes, together with 11 family caregivers of 13 children. Results: Data is presented in the following categories: structural, developmental and functional evaluation, which show the changes in the family routine and the needs for the adjustment of the roles of its members, in order to better implement the care at home. Conclusions: Using the CMFA made it possible to identify and understand the composition, fragilities and potentialities of the family, as well as the relationships among its members and rearrangements to better enable care at home. This information favors interventions congruent with the needs of these families.

scholarly journals Maternal Barriers in Raising Children with Special Needs in Rural Areas: A Qualitative Study

2020 ◽  
Vol 7 (2) ◽  
pp. 156-163
Author(s):  
Cau Kim Jiu ◽  
◽  
Pitri Pitri ◽  
Kharisma Pratama ◽  
Usman Usman ◽  
...  
Keyword(s):  
Special Needs ◽  
Rural Areas ◽  
Access To Health Care ◽  
Health Care Services ◽  
Children With Special Needs ◽  
Raising Children ◽  
Face To Face ◽  
Care Services ◽  
The Government ◽  
Families With Children

It is not easy for mothers living in rural areas to raise children with special needs because various obstacles arise from both within and outside the family. This study aimed to explore various obstacles for mothers in raising children with special needs, especially in rural areas. The research design used in this study was descriptive qualitative. The sample in this study consisted of 55 mothers who were selected using purposive sampling method. Data collection was carried out through semi-structured face-to-face interviews and through focus group discussions. The data collected in this study was then analyzed using thematic analysis. There are 3 themes generated in this research including 1) family perception, 2) financials, and 3) access to health care services. Information obtained from this research can provide solutions for families to overcome or get out from the existing barriers and provide information to the government to provide health services to families with children with special needs in rural areas.

scholarly journals The experience of patients and family caregivers during Hospital-at-Home in France

2019 ◽  
Vol 29 (Supplement_4) ◽  
Author(s):  
H Rossinot ◽  
O Marquestaut ◽  
M De Stampa
Keyword(s):  
Health Care ◽  
Family Caregivers ◽  
Health Care Professionals ◽  
Health Care Services ◽  
University Hospitals ◽  
Subacute Care ◽  
Care Services ◽  
Hospital At Home ◽  
Zarit Burden Inventory ◽  
At Home

Abstract Background Public health policies tend to generalize the use of Hospital-At-Home (HAH) to answer the growing will of patients to be treated or to die at home. HAH is a model of care that provides acute-level services in the patient’s home with the interventions of variety of health care professionals. Relatives participate also in the interventions by helping for sick patients at home, but we lack data on the care of patients and caregivers in HAH. The aim of this study was to make an inventory of the experiences of patients and family caregivers in HAH. Methods The research was qualitative using nineteen semi-directed interviews from nine patients and ten caregivers of one care unit of Greater Paris University Hospitals’ HAH, and the grounded theory was used to analyze the transcripts. Caregivers were also asked, after the interview, to fill in the Zarit Burden Inventory. Results HAH remained mostly unknown for patients and caregivers before the admission proposition and the outlook of being admitted in HAH was perceived as positive, for both of them. Caregivers had a versatile role throughout HAH, leading to situations of suffering, but also had sources of support. The return home was considered satisfactory by both caregivers and patients, related to the quality of care and increased morale despite HAH’s organizational constraints. We noted an impact of HAH on the relationship between the patient and the caregiver(s), but caused by multiple factors: the fact that the care takes places at home, its consequences but also the disease itself. Conclusions HAH strongly involved the patient’s caregiver(s) all along the process. HAH’s development necessitates to associate both patients and caregivers and to take into account their needs at every step. This study highlights the need to better assess the ability of the caregiver to cope with his or her relative in HAH with acute and subacute care at home. Key messages Health care services need to take into account family caregivers. Hospital at home services should be developped worldwide.

scholarly journals Maternal care at home for children with special needs

2015 ◽  
Vol 33 (3) ◽  
Author(s):  
Livian Damiele Coelho Ramos ◽  
◽  
Juliana Rezende Montenegro Medeiros de Moraes ◽  
Liliane Faria da Silva ◽  
Fernanda Garcia Bezerra Goés ◽  
...  
Keyword(s):  
Special Needs ◽  
Maternal Care ◽  
Children With Special Needs ◽  
Care At Home ◽  
At Home

scholarly journals Caring for One’s Wife With Dementia—at Home: Older Husbands’ Experiences With Managing Challenges of Everyday Life

SAGE Open ◽  
2019 ◽  
Vol 9 (1) ◽  
pp. 215824401983445
Author(s):  
Linda Rykkje ◽  
Oscar Tranvåg
Keyword(s):  
Health Care ◽  
Health Care Services ◽  
Qualitative Interviews ◽  
Care Services ◽  
People With Dementia ◽  
Memory Clinics ◽  
Male Caregivers ◽  
Caregiving Roles ◽  
Caregiver Role ◽  
At Home

More than 80,000 Norwegians live with dementia. Most caregivers for people with dementia are spouses, and women outnumber men. Due to an aging population, and women’s higher risk of dementia as well as men’s increased life expectancy, the number of male caregivers will rise. There are some differences in the caregiving roles of men and women. Research suggest that males report lower burden and depression than female caregivers, but some men struggle to adjust to the caregiver role, and men are less likely to access health care services. The aim of this study is to explore the experiences of husbands engaged in caregiving for their home-dwelling spouse with dementia. This knowledge will add to the growing body of research about men in the context of dementia care and may raise gender awareness. The method is qualitative interviews with hermeneutical interpretation. The participants are five husbands recruited from two Hospital Memory Clinics in Norway. The results portray how the husbands managed their everyday challenges, and how they adapted to changes, experiences of loss and bereavement, and how they redefined personal freedom and expanded their responsibilities. Acknowledging the rewards of caregiving, the husbands found their life meaningful and they were thriving in their caregiving role. Health care personnel should recognize and respect the challenging life situation caregiving husbands may experience, calling for personnel to learn from, care for, and collaborate with them, enabling the couple to live a meaningful life together at home as long as possible.

scholarly journals Older people living at home: experiences of healthy ageing

2021 ◽  
Vol 22 ◽  
Author(s):  
Astrid Fjell ◽  
Kristin Ådnøy Eriksen ◽  
Monica Hermann ◽  
Anne-Marie Boström ◽  
Seiger Berit Cronfalk
Keyword(s):  
Health Care ◽  
Older People ◽  
Older Persons ◽  
Health Care Services ◽  
Healthy Ageing ◽  
Group Discussions ◽  
Care Services ◽  
Manifest Content ◽  
Professional Perspective ◽  
At Home

Abstract Aim: The purpose of this study was to investigate how old persons perceived their life to be, how they viewed the ageing process and their need of health care and societal support. Background: The purpose of WHO’s Healthy Ageing strategy and development of age-friendly environments is to support physiological and psychosocial changes in old persons by facilitating basic needs. Interventions to operationalize these needs in older people living at home are often developed from a professional perspective and to a small extent involves the perceptions, experience and expectations of the older persons. Method: This qualitative study has an explorative design using focus group discussions to collect data. In all, 34 persons between 69 and 93 years of age participated in seven group discussions. The interviews were analyzed using inductive manifest content analysis. Findings: The main results suggest that most old persons enjoyed life and wished it to continue for as long as possible. Important was to sustain networks and to feel useful. Unexpected changes were described as threats and the need to use health care services was associated with illness and being dependent. The result is presented in three categories with sub-categories: ‘Embracing life’, ‘Dealing with challenges’ and ‘Considering the future’.

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