scholarly journals Pilot RCT Assessing the Impact of the Family Support Tool on Family Members' Ratings of the Quality of Communication in ICUs

2020 ◽  
Author(s):  
A. Suen ◽  
D.B. White ◽  
R. Butler ◽  
A. Argenas ◽  
P. Buddadhumaruk ◽  
...  
Keyword(s):  
Family Support ◽  
Family Members ◽  
Support Tool ◽  
The Family ◽  
Pilot Rct ◽  
The Impact

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 “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 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 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 Family reported outcomes, an unmet need in the management of a patient's disease: appraisal of the literature

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
R. Shah ◽  
F. M. Ali ◽  
A. Y. Finlay ◽  
M. S. Salek
Keyword(s):  
Quality Of Life ◽  
Family Members ◽  
Unmet Need ◽  
Reliability And Validity ◽  
Chronic Health Condition ◽  
Family Quality Of Life ◽  
Good Reliability ◽  
Huge Impact ◽  
The Impact

Abstract Background A person’s chronic health condition or disability can have a huge impact on the quality of life (QoL) of the whole family, but this important impact is often ignored. This literature review aims to understand the impact of patients' disease on family members across all medical specialities, and appraise existing generic and disease-specific family quality of life (QoL) measures. Methods The databases Medline, EMBASE, CINHAL, ASSIA, PsycINFO and Scopus were searched for original articles in English measuring the impact of health conditions on patients' family members/partner using a valid instrument. Results Of 114 articles screened, 86 met the inclusion criteria. They explored the impact of a relative's disease on 14,661 family members, mostly 'parents' or 'mothers', using 50 different instruments across 18 specialities including neurology, oncology and dermatology, in 33 countries including the USA, China and Australia. These studies revealed a huge impact of patients' illness on family members. An appraisal of family QoL instruments identified 48 instruments, 42 disease/speciality specific and six generic measures. Five of the six generics are aimed at carers of children, people with disability or restricted to chronic disease. The only generic instrument that measures the impact of any condition on family members across all specialities is the Family Reported Outcome Measure (FROM-16). Although most instruments demonstrated good reliability and validity, only 11 reported responsiveness and only one reported the minimal clinically important difference. Conclusions Family members' QoL is greatly impacted by a relative's condition. To support family members, there is a need for a generic tool that offers flexibility and brevity for use in clinical settings across all areas of medicine. FROM-16 could be the tool of choice, provided its robustness is demonstrated with further validation of its psychometric properties.

scholarly journals Personality and Dementia: an Approach to Differential Profile of the Caregiver

2011 ◽  
Vol 1 (3) ◽  
pp. 85-94
Author(s):  
Elena de Andrés-Jiménez ◽  
Rosa Mª Limiñana-Gras ◽  
Encarna Fernández-Ros
Keyword(s):  
Relevant Information ◽  
Personality Profile ◽  
Family Carers ◽  
Psychological Variables ◽  
People With Dementia ◽  
The Family ◽  
Study Population ◽  
The One ◽  
The Impact

The aim of this study is to determine the existence of a characteristic personality profile of family carers of people with dementia. The correct knowledge and use of psychological variables which affect the carer, helps to promote appropriate actions to mitigate the impact of care and improve the carer’s quality of life and likewise the one of the person cared for. The study population consists of 69 family carers of people with dementia, members of various associations and care centers. The results allow us to identify a characteristic personality profile for these carers and it reveals a specific psychological working in this sample, although we cannot directly relate it with the tasks of caring for people with this disease, this profile gives us very relevant information to pay more attention to the needs of this group. Moreover, the analysis of personality styles depends on the sex of the family carer, showing, once again, that the woman is in a situation of most vulnerability.

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.

scholarly journals Validation of the German version of the Family Reported Outcome Measure (FROM-16) to assess the impact of disease on the partner or family member

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Susanne A. Elsner ◽  
Sam S. Salek ◽  
Andrew Y. Finlay ◽  
Anna Hagemeier ◽  
Catherine J. Bottomley ◽  
...  
Keyword(s):  
Factor Analysis ◽  
Family Member ◽  
Internal Consistency ◽  
Outcome Measure ◽  
Test Validity ◽  
Family Members ◽  
German Version ◽  
The Family ◽  
The Difference ◽  
The Impact

Abstract Background The Family Reported Outcome Measure (FROM-16) assesses the impact of a patient’s chronic illness on the quality of life (QoL) of the patient’s partner or family members. The aim of the study was to translate, explore the structure of and validate the FROM-16. Methods The questionnaire was translated from English into German (forward, backward, four independent translators). Six interviews with family members were conducted to confirm the questionnaire for linguistic, conceptual, semantic and experiential equivalence and its practicability. The final German translation was tested for internal consistency, reproducibility and test validity. Criterion validity was tested by correlating the scores of the FROM-16 and the Global Health Scale (GHS). Principal component analysis, factor analysis, and confirmatory factor analysis was used to assess the questionnaire’s structure and its domains. Reliability and reproducibility were tested computing the intraclass correlation coefficient (ICC) using one sample t-test for testing the hypothesis that the difference between the scores was not different from zero. Results Overall, 83 family members (61% female, median age: 61 years) completed the questionnaire at two different times (mean interval: 22 days). Internal consistency was good for the FROM-16 scores (Cronbach’s α for total score = 0.86). In those with stable GHS, the ICC for the total score was 0.87 and the difference was not different from zero (p = 0.262) indicating reproducible results. A bi-factor model with a general factor including all items, and two sub-factors comprising the items from the original 2-factor construct had the best fit. Conclusions The German FROM-16 has good reliability, test validity and practicability. It can be considered as an appropriate and generic tool to measure QoL of a patient’s partner or family member. Due to the presence of several cross-loadings we do not recommend the reporting of the scores of the two domains proposed for the original version of FROM-16 when using the German version. Thus, in reporting the results emphasis should be put on the total score. Trial registration: Retrospectively registered: DRKS00021070.

Family tourism: Interpersonal interaction, existential authenticity and quality of tourist experience

2021 ◽  
pp. 135676672110224
Author(s):  
Han Chen ◽  
Yan Jiao ◽  
Xiaoyi Li ◽  
Kun Zhang
Keyword(s):  
Nuclear Family ◽  
Emotional Experience ◽  
Effective Interaction ◽  
Tourism Industry ◽  
Interpersonal Interaction ◽  
The Family ◽  
Tourist Experience ◽  
Role Of Parents ◽  
The Impact

The functional value experience of family tourism has often been paid attention both by tourists themselves and the tourism industry, but the individual value experience of parents in family tourism has been neglected. Family tourism shifts the scenario of interpersonal interaction between families from home, the conventional environment, to a non-conventional one. This change in the interactive situation will inevitably bring about changes in interpersonal interaction behavior and individual perception, especially to tourists who take on the role of parents in a nuclear family. This study enriches the examination of the family tourism experience by exploring the interpersonal interaction, existential authenticity travel experiences, and quality of tourist experience perceived by parents in family tourism. The main findings are: 1) In the non-conventional environment of tourism, effective interaction between tourists and their families helps to improve tourists’ emotional experience and satisfaction; 2) Three aspects of existential authenticity are the internal causes of the impact of interpersonal interaction on emotional experience and satisfaction; 3) Differences in parental roles make important discrepancies between men and women’s perception of family tourism experiences. This study provides insights to understanding the family tourism market and brings valuable findings to the area of family tourism marketing and management.

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