scholarly journals How to live with Alzheimer disease - quality of life is equally important for the family members and for the patient

2021 ◽  
Vol 21 (S1) ◽  
pp. 219
Author(s):  
Josipovic Jelic Zeljka
Keyword(s):  
Quality Of Life ◽  
Alzheimer Disease ◽  
Family Members ◽  
The Family

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.

scholarly journals Transactional Analysis as a Method to Test the Quality of Life of a Family

2015 ◽  
Vol 5 (1) ◽  
pp. 27-38
Author(s):  
Dorota Strzelczyk
Keyword(s):  
Quality Of Life ◽  
Complex System ◽  
Interpersonal Communication ◽  
Interpersonal Relationships ◽  
Family Environment ◽  
Family Members ◽  
Transactional Analysis ◽  
Open Disclosure ◽  
The Family

Abstract One of the actions that affect the quality of life of the family as a complex system of relationships is interpersonal communication that takes place between the members of the family. In line with the transactional analysis, the trend in psychology founded by E. Berne, relationships between individuals should be based on honest and open disclosure of one’s desires and attitudes, i.e. variety of transactions. Otherwise, there are specific game leading to maintain and increase the distance between family members, weaken the ties between them and leading to a reduction in the quality of interpersonal relationships. The paper below aims to make closer the problems of transactional analysis, beginning from the explanation of the structure of “Ego” according to Berne and the terms “transactions”, “reinforcement” and “life scripts”. There will be presented also games played in family environment and their consequences for the proper functioning of the family.

scholarly journals “Her Illness Is a Project We Can Work on Together”

2013 ◽  
Vol 15 (3) ◽  
pp. 130-136 ◽  
Author(s):  
David Rintell ◽  
Richard Melito
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Crisis Intervention ◽  
Family Members ◽  
The Family ◽  
New Diagnosis ◽  
The Impact ◽  
Family Centered

This article presents a model for intervening with families that are addressing a new diagnosis of multiple sclerosis (MS) in one member. The model is collaborative, integrative, and family-centered. It involves both working with the family collaboratively and providing strategies to promote greater collaboration within the family. The model integrates elements of crisis intervention theory, psycho-education, and family-centered approaches. The model was developed with families addressing MS, and was piloted with three families. The intervention was found to improve family members' ability to collaborate with each other. Such increased collaboration may enhance the family's ability to manage long-term illness more effectively, help the family address the impact of the illness on all family members, and generally improve the family's quality of life.

scholarly journals Family Composition and Expressions of Family-Focused Care Needs at an Academic Memory Disorders Clinic

2013 ◽  
Vol 2013 ◽  
pp. 1-6
Author(s):  
Brandalyn C. Riedel ◽  
Jamie K. Ducharme ◽  
David S. Geldmacher
Keyword(s):  
Quality Of Life ◽  
Treatment Success ◽  
Family Members ◽  
Family Quality Of Life ◽  
Care Needs ◽  
Family Unit ◽  
Dementia Patients ◽  
People With Dementia ◽  
The Family

Objective. To understand who dementia patients identify as their family and how dementia affects family life.Background. Dementia care is often delivered in family settings, so understanding the constituency and needs of the family unit involved in care is important for determining contributors to family quality of life.Design/Methods. Seventy-seven families receiving care at an academic dementia clinic completed questionnaires regarding the affected person and the family. Responses were categorized as focused on an individual’s needs or the family’s needs.Results. Respondents identified a mean of 3.77 family members involved in care. Spouse (80.5%), daughter (58.4%), son (46.8%), and stepchild or child-in-law (37.7%) were the most frequently listed family members. Questions regarding the effect of dementia-related changes in cognition and mood were most likely to elicit a family-focused response. Questionnaire items that inquired about specific medical questions and strategies to improve family function were least likely to elicit a family-focused response.Conclusions. Both caregivers and persons with dementia frequently provided family-focused responses, supporting the construct of dementia as an illness that affects life in the family unit. This finding reinforces the potential utility of family-centered quality of life measures in assessing treatment success for people with dementia.

scholarly journals 416 - Family quality of life in Neurodegenerative Diseases and associated factors

2021 ◽  
Vol 33 (S1) ◽  
pp. 39-39
Author(s):  
Eva González ◽  
Alba Aza ◽  
Isabel Vicario-Molina ◽  
María Gómez-Vela ◽  
Mª Begoña Orgaz ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Neurodegenerative Diseases ◽  
Rural Areas ◽  
Family Members ◽  
Explanatory Models ◽  
Border Region ◽  
Family Quality Of Life ◽  
The Family ◽  
The Impact

Introduction:Neurodegenerative diseases (NDs) are one of the major causes of dependency among older people. Since family members assume most of the care, the impact of NDs goes beyond the patient and affects the functioning of the entire family. Nonetheless, the concept of Family Quality of Life (FQOL) is still insufficiently developed in this field: the literature has focused on family caregivers from an individual perspective, paying less attention to the family unit. Hence, the objectives were to describe FQOL of people with NDs and to identify factors associated, from a holistic point of view.Method:The sample consisted of 300 family members of patients with NDs (70% females; mean age: 62.4) living in the cross-border region of Spain-Portugal, mostly in rural areas. The majority were primary caregivers. They completed the FQOLS–ND via telephone. This survey examined how the family perceived its FQOL at the global and domain-level, in terms of attainment and satisfaction (measured on a 5-point Likert scale). It also collected data on diverse respondents’ and family characteristics.Results:The average score in Global FQOL was 3.65 (SD = 0.70) for attainment and 3.69 (SD = 0.47) for satisfaction. By domains, the highest value was found in Family Relations and the lowest in Support from services. Twenty hierarchical multiple regressions examined the potential predictors of Global FQOL and the nine domains for attainment and satisfaction. Medium predictive values (from R2=.14 to R2=.20) were found in Financial wellbeing (satisfaction), Support from services, and Leisure. The number of perceived barriers to social-health services was a significant predictor in all the explanatory models (the most frequently cited being: long wait for service, services not available, problems with transportation, lack of information, and financial costs).Conclusions:These results confirm that NDs are especially challenging in rural areas, where families feel more isolated and have fewer opportunities to receive professional support. Therefore, there is a need to design of a specific portfolio of services, resources and benefits that involves the key sectors of family welfare (public, private, third sector and family) and brings them closer to these areas, covering all the needs.

scholarly journals A Multicenter Study On Quality Of Life of The “Greater Patient” In Congenital Ichthyoses

2021 ◽  
Author(s):  
Damiano Abeni ◽  
Roberta Rotunno ◽  
Andrea Diociaiuti ◽  
Simona Giancristoforo ◽  
Domenico Bonamonte ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Family Members ◽  
Whole Body ◽  
Recurrent Infections ◽  
Psychological Burden ◽  
Patient Reported ◽  
The Family ◽  
Foul Smell ◽  
Disease Impact

Abstract Background: Autosomal recessive congenital ichthyoses (ARCI) are a genetically heterogeneous group of rare and chronic disorders characterized by generalized skin scaling and hyperkeratosis, erythroderma, and palmoplantar keratoderma. Additional features include ectropion, eclabium, ear deformities, foul-smell, joints contractures and walking problems, recurrent infections, as well as pruritus and pain. No curative therapy is available and disease care mainly relies on daily application of topical emollients and keratolytics to the whole-body surface. Altogether, disease signs and symptoms and treatment modalities have a major impact on quality of life of patients and their caregivers. However, very few studies have evaluated the family disease burden in ARCI. Methods: We have performed an Italian multicenter cross-sectional study to assess the secondary disease impact on family members of pediatric and adult patients with ARCI, using a validated dermatology-specific questionnaire, the Family Dermatology Life Quality Index (FDLQI). Disease severity was assessed by the dermatologist in each center.Results: Seventy-eight out of 82 patients who were accompanied by at least one family member filled the FDLQI. Forty-eight (61.5%) patients were aged less than 18 years. The mean FDLQI score was 10.3 (median 10), and the most affected dimensions were (i) time needed for care, (ii) extra-housework, and (iii) household expenditure. Higher total FDLQI score significantly correlated with more severe disease score (P= 0.003). Features associated with greater family burden included recurrent infections (P= 0.004), foul-smell (P=0.009), palmplantar keratoderma (P= 0.041), but also presence of scales on the face (P= 0.039) and ear deformities (P= 0.016). Conclusions: Our findings highlight the major socio-economic and psychological burden imposed by ARCI on the QoL of caregivers. In addition, they show that global evaluation of disease impact also on family members is an essential part of patient-reported outcomes. Finally, our data underline the need to develop specific measures for family support.

scholarly journals Dukungan Keluarga Dalam Peningkatan Kualitas Hidup Pasien Dengan Gagal Ginjal Kronik Di Rsud dr. Doris Sylvanus Palangka Raya

2019 ◽  
Vol 10 (2) ◽  
pp. 795-808
Author(s):  
Putria Carolina ◽  
Zia Abdul Aziz
Keyword(s):  
Quality Of Life ◽  
Family Support ◽  
Support System ◽  
Kidney Failure ◽  
Family Members ◽  
Chronic Kidney Failure ◽  
Kidney Damage ◽  
Electrolyte Balance ◽  
The Family

Latar Belakang: Gagal ginjal kronis (GGK) adalah kerusakan ginjal yang bersifat progresif dan ireversibel sehingga fungsi ginjal menghilang serta terjadi kerusakan ginjal progresif yang berakibat fatal dan ditandai dengan uremia (urea dan limbah nitrogen lainnya) yang beredar dalam darah serta komplikasinya jika tidak dilakukan dialisis atau transplantasi ginjal. GGK atau penyakit ginjal tahap akhir merupakan gangguan fungsi ginjal yang progresif dan ireversibel dimana kemampuan tubuh gagal untuk mempertahankan metabolisme dan keseimbangan cairan dan elektrolit, menyebabkan uremia (retensi urea dan sampah nitrogen lainnya dalam darah. Peran keluarga sangat penting bagi setiap aspek perawatan kesehatan anggota keluarga. Dukungan keluarga pada pasien dengan gagal ginjal kronik berupa dukungan instrumental, dukungan informasional, dukungan emosional, dukungan penghargaan dan dukungan harga diri. Dukungan keluarga ini diberikan sepajang hidup pasien yang menunjang untuk penyembuhan pasien. Kualitas hidup adalah ukuran konseptual atau operasional yang sering digunakan dalam situasi penyakit kronik sebagai cara untuk menilai dampak terapi pada pasien. Pengukuran konseptual mencakup kesejahteraan, kualitas kelangsungan hidup, kemampuan seseorang untuk secara mandiri melakukan kegiatan sehari-hari. Kualitas merupakan sasaran utama yang ingin dicapai di bidang pembangunan sehingga kualitas hidup ini sejalan dengan tingkat kesejahteraan. Diharapkan semakin sejahtera maka kualitas hidup semakin tinggi. Kualitas hidup ini salah satunya dipengaruhi oleh derajat kesehatan. Semakin tinggi derajat kesehatan seseorang maka kualitas hidup juga semakin tinggiTujuan: Penelitian ini bertujuan untuk memperoleh gambaran dukungan keluarga dalam meningkatkan kualitas hidup pasien dengan gagal ginjal kronik di RSUD Dr. Doris Sylvanus Palangka Raya.Metode: Pengumpulan data dilakukan dengan wawancara mendalam pada sembilan orang partisipan yaitu keluarga yang anggota keluarganya menjalani Hemodialisa di Unit Hemodialisa RSUD Dr. Doris Sylvanus Palangka Raya. Analisis data yang digunakan menggunakan teknik Collaizi.Hasil: Terdapat lima tema yang teridentifikasi dalam penelitian ini yaitu respon berduka; respon menerima; dampak psikososial; dampak spiritual dan dukungan keluarga. Simpulan: Berdasarkan hasil penelitian ini diharapkan perawat meningkatkan peran dan fungsinya dengan baik dalam melaksanakan asuhan keperawatan professional dengan melibatkan keluarga sebagai support system sehingga dapat dicapai kualitas hidup pasien dengan optimal.Kata Kunci: dukungan keluarga, GGK, kualitas hidup Background: Chronic kidney failure (CKD) is kidney damage that is progressive and irreversible so that kidney function disappears and progressive kidney damage occurs which is fatal and is characterized by uremia (urea and other nitrogen wastes) circulating in the blood and its complications if no dialysis is performed or kidney transplant. CKD or end-stage kidney disease is a progressive and irreversible renal function disorder where the body's ability to fail to maintain metabolism and fluid and electrolyte balance, causes uremia (retention of urea and other nitrogenous wastes in the blood. The role of the family is very important for every aspect of health care for family members Family support for patients with chronic kidney failure in the form of instrumental support, informational support, emotional support, appreciation support and self-esteem support This family support is given as long as a patient's life that supports patient recovery.Quality of life is a conceptual or operational measure that is often used in chronic disease situation as a way to assess the impact of therapy on patients Conceptual measurements include well-being, quality of survival, ability of a person to independently carry out daily activities Quality is the main target to be achieved in development so that the quality of life is in line with the level of welfare. It is hoped that the more prosperous the higher the quality of life. Quality of life is one of them influenced by the degree of health. The higher the degree of one's health, the higher the quality of life.Objective: This study aims to obtain a picture of family support in improving the quality of life of patients with chronic kidney failure at RSUD Dr. Doris Sylvanus Palangka Raya.Method: Data collection was carried out by in-depth interviews with nine participants, namely families whose family members underwent Hemodialysis in the Hemodialysis Unit of RSUD Dr. Doris Sylvanus Palangka Raya. Analysis of the data used using the Collaizi technique.Results: There were five themes identified in this study, namely the grieving response; response received; psychosocial impact; spiritual impact and family support.Conclusion: Based on the results of this study nurses are expected to increase their role and function properly in implementing professional nursing care by involving the family as a support system so that optimal quality of life of patients can be achieved.Keywords: family support, CRF, quality of life.

scholarly journals Mental Health and Quality of Life Differences Between the Family Members and Paid Caregivers in Brain Injury

2019 ◽  
Vol 22 (3) ◽  
pp. 85-91
Author(s):  
Emre ATA ◽  
Emre ADIGÜZEL ◽  
Sezer KİRAZ ◽  
Murat KÖSEM ◽  
Evren YAŞAR
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Brain Injury ◽  
Family Members ◽  
The Family ◽  
Paid Caregivers

scholarly journals A multicenter study on quality of life of the “greater patient” in congenital ichthyoses

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Damiano Abeni ◽  
Roberta Rotunno ◽  
Andrea Diociaiuti ◽  
Simona Giancristoforo ◽  
Domenico Bonamonte ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Family Members ◽  
Whole Body ◽  
Recurrent Infections ◽  
Palmoplantar Keratoderma ◽  
Patient Reported ◽  
The Family ◽  
Foul Smell ◽  
Disease Impact

Abstract Background Autosomal recessive congenital ichthyoses (ARCI) are a genetically heterogeneous group of rare and chronic disorders characterized by generalized skin scaling and hyperkeratosis, erythroderma, and palmoplantar keratoderma. Additional features include ectropion, eclabium, ear deformities, foul-smell, joints contractures and walking problems, recurrent infections, as well as pruritus and pain. No curative therapy is available and disease care mainly relies on daily application of topical emollients and keratolytics to the whole-body surface. Altogether, disease signs and symptoms and treatment modalities have a major impact on quality of life of patients and their caregivers. However, very few studies have evaluated the family disease burden in ARCI. Methods We have performed an Italian multicenter cross-sectional study to assess the secondary disease impact on family members of pediatric and adult patients with ARCI, using a validated dermatology-specific questionnaire, the family dermatology life quality index (FDLQI). Disease severity was assessed by the dermatologist in each center. Results Seventy-eight out of 82 patients who were accompanied by at least one family member filled the FDLQI. Forty-eight (61.5%) patients were aged less than 18 years. The mean FDLQI score was 10.3 (median 10), and the most affected dimensions were (1) time needed for care, (2) extra-housework, and (3) household expenditure. Higher total FDLQI score significantly correlated with more severe disease score (P = 0.003). Features associated with greater family burden included recurrent infections (P = 0.004), foul-smell (P = 0.009), palmoplantar keratoderma (P = 0.041), but also presence of scales on the face (P = 0.039) and ear deformities (P = 0.016). Conclusions Our findings highlight the major socio-economic and psychological burden imposed by ARCI on the QoL of family caregivers. In addition, they show that global evaluation of disease impact also on family members is an essential part of patient-reported outcomes. Finally, our data underline the need to develop specific measures for family support.

scholarly journals Assessment of role of burden in caregivers of substance abusers: a study done at Swami Vivekananda Drug De-addiction Centre, Govt. Medical College, Amritsar

2018 ◽  
Vol 5 (6) ◽  
pp. 2380 ◽  
Author(s):  
Arshdeep Kaur ◽  
Sanjeev Mahajan ◽  
Shyam Sunder Deepti ◽  
Tejbir Singh
Keyword(s):  
Quality Of Life ◽  
Emotional Support ◽  
Substance Abusers ◽  
Family Members ◽  
Cross Sectional ◽  
Medical College ◽  
The Family ◽  
Swami Vivekananda

Background: Substance abuse is a multidimensional problem, which threatens the quality of life of not only substance abusers but also the family members who live with them. Most of the time a member of the family assumes the role of caregiver and he or she is most burdened from this process. Considering that the involvement of family members is recommended for the recovery process of chemical dependents, it is necessary to appropriately provide the training to caregivers and evaluate their needs for caregiving.Methods: This cross sectional study was conducted at Swami Vivekananda Drug De-addiction Centre attached to the Government Medical College, Amritsar from January 2016 to December 2016. A total of 349 caregivers of substance abusers were interviewed by using pretested and semi structured questionnaire.Results: 44.69% caregivers were wives. Mean age of the caregiver was 33.45 years. 25.21% were high pass. 67.6% were housewives. None was trained in caregiving professionally. 37.53% provided family care while emotional support to the patients was provided by only 10% women and 2% men, no gender specific association with emotional support was statistically significant. 54.15% developed stress while caregiving, 12.60% had social and financial problems.Conclusions: Findings confirmed that quality of life is compromised and stress is high among caregivers, highlighting the need for providing emotional support.

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