The development and validation of the Family Reported Outcome Measure (FROM-16)© to assess the impact of disease on the partner or family member

2013 ◽  
Vol 23 (1) ◽  
pp. 317-326 ◽  
Author(s):  
Catherine Jane Golics ◽  
Mohammad Khurshid Azam Basra ◽  
Andrew Yule Finlay ◽  
Sam Salek
Keyword(s):  
Family Member ◽  
Outcome Measure ◽  
The Family ◽  
Development And Validation ◽  
The Impact

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.

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.

scholarly journals Validation of the Thai version of the family reported outcome measure (FROM-16)© to assess the impact of disease on the partner or family members of patients with cancer

2019 ◽  
Vol 17 (1) ◽  
Author(s):  
Pattariya Chantarasap ◽  
Nutjaree Pratheepawanit Johns ◽  
Srivieng Pairojkul ◽  
Aumkhae Sookprasert ◽  
Kosin Wirasorn ◽  
...  
Keyword(s):  
Outcome Measure ◽  
Family Members ◽  
Patients With Cancer ◽  
The Family ◽  
The Impact

scholarly journals Caring Near and Far by Connecting Community-Based Clients and Family Member/Friend Caregivers Using Passive Remote Monitoring: Protocol for a Pragmatic Randomized Controlled Trial

10.2196/15027 ◽  
2020 ◽  
Vol 9 (1) ◽  
pp. e15027
Author(s):  
Lorie Donelle ◽  
Sandra Regan ◽  
Michael Kerr ◽  
Merrick Zwarenstein ◽  
Michael Bauer ◽  
...  
Keyword(s):  
Older Adults ◽  
Home Care ◽  
Family Member ◽  
Controlled Trial ◽  
Term Care ◽  
Pragmatic Randomized Controlled Trial ◽  
Randomized Controlled ◽  
The Family ◽  
The Impact

Background Significant chronic disease challenges exist among older adults. However, most older adults want to remain at home even if their health conditions challenge their ability to live independently. Yet publicly funded home care resources are scarce, private home care is expensive, and family/friend caregivers have limited capacity. Many older adults with chronic illness would require institutional care without the support from family member/friend caregivers. This role raises the risk of physical health problems, stress, burnout, and depression. Passive remote monitoring (RM), the use of sensors that do not require any action by the individual for the system to work, may increase the older adult’s ability to live independently while also providing support and peace of mind to both the client and the family member/friend caregiver. Objective This paper presents the protocol of a study conducted in two provinces in Canada to investigate the impact of RM along with usual home care (the intervention) versus usual home care alone (control) on older adults with complex care. The primary outcome for this study is the occurrence of and time to events such as trips to emergency, short-term admission to the hospital, terminal admission to the hospital awaiting admission to long-term care, and direct admission to long-term care. The secondary outcomes for this study are (1) health care costs, (2) client functional status and quality of life in the home, (3) family/friend caregiver stress, and (4) family/friend caregiver functional health status. Methods The design for this study is an unblinded pragmatic randomized controlled trial (PRCT) with two parallel arms in two geographic strata (Ontario and Nova Scotia). Quantitative and qualitative methodologies will be used to address the study objectives. This PRCT is conceptually informed by the principles of client-centered care and viewing the family as the client and aims at providing supported self-management. Results This study is supported by the Canadian Institutes for Health Research. A primary completion date is anticipated in fall 2022. Conclusions Findings from this real-world rigorous randomized trial will support Canadian decision-makers, providers, and clients and their caregivers in assessing the health, well-being, and economic benefits and the social and technological challenges of integrating RM technologies to support older adults to stay in their home, including evaluating the impact on the burden of care experienced by family/friend caregivers. With an aging population, this technology may reduce institutionalization and promote safe and independent living for the elderly as long as possible. Trial Registration International Standard Randomised Controlled Trial Number (ISRCTN) 79884651; http://www.isrctn.com/ISRCTN79884651 International Registered Report Identifier (IRRID) DERR1-10.2196/15027

Bereavement

2021 ◽  
pp. 126-134
Author(s):  
Sara Portnoy ◽  
Lori Ives-Baine
Keyword(s):  
Young People ◽  
Family Member ◽  
Close Family Member ◽  
The Family ◽  
Adults And Children ◽  
Child's Death ◽  
The Impact ◽  
Close Family

Most families do not expect to bury a child. Adults expect to die before their children, certainly before their grandchildren. Yet every year parents face the enormous grief of having their child die and many young people experience the death of their sibling. This chapter discusses the impact of a child’s death on families, adults, and children, and describes interventions, based on theory, that may help bereaved families. Although unimaginable, most children and their families will cope with the death of a close family member, especially if they can express their feelings and thoughts, if the family can talk about what is happening and about their memories of the deceased, and if they have the opportunity to meet others who have been bereaved.

scholarly journals Development and validation of a new patient-reported outcome measure for peripheral nerve disorders of the hand, the I-HaND© Scale

2018 ◽  
Vol 43 (8) ◽  
pp. 864-874 ◽  
Author(s):  
Mark Ashwood ◽  
Christina Jerosch-Herold ◽  
Lee Shepstone
Keyword(s):  
Outcome Measure ◽  
Intraclass Correlation ◽  
Principal Component ◽  
Patient Reported Outcome ◽  
Face To Face ◽  
Patient Reported Outcome Measure ◽  
Patient Reported ◽  
Test Retest Reliability ◽  
Development And Validation ◽  
The Impact

Following guidelines from the Patient-Centred Outcomes Research Institute and using a mixed methods study, a new patient-reported outcome measure (PROM) for both nerve trauma and compression affecting the hand, the Impact of a Hand Nerve Disorders (I-HaND) Scale, was developed. Face-to-face interviews with 14 patients and subsequent pilot-testing with 61 patients resulted in the development of the 32-item PROM. A longitudinal validation study with 82 patients assessed the psychometric properties of the I-HaND. Content and construct validity was confirmed by cognitive interviews with patients and through principal component analysis. The I-HaND has high internal consistency (α = 0.98) and excellent test–retest reliability (intraclass correlation coefficient = 0.97). Responsiveness statistics showed that the I-HaND can detect change over 3 months and discriminate between improvers and non-improvers. We conclude that the I-HaND can be used as a PROM for people with a range of hand nerve disorders.

scholarly journals Dampak Pemutusan Hubungan Kerja di Masa Pandemi Covid-19 Terhadap Ketahanan Keluarga

2021 ◽  
Vol 4 (1) ◽  
pp. 61
Author(s):  
Nabila Luthvita Rahma ◽  
Anisa Yuniar ◽  
Fatimah Qurrotu A'yun ◽  
Indri Kurniati ◽  
Dania Saferina Ifada
Keyword(s):  
Family Member ◽  
Interpersonal Communication ◽  
Family Law ◽  
Family Members ◽  
Divorce Rate ◽  
Family Resilience ◽  
The Family ◽  
Islamic Family Law ◽  
The Impact

<p><em>The purpose of this study was to determine the impact of termination of employment during the Covid-19 pandemic on family resilience. This study uses a case approach and a law approach with primary legal sources and secondary legal sources in the form of books or legal journals related to the research title. The results of this study indicate that the termination of employment experienced by the head of the family or family member during the Covid-19 pandemic did not significantly affect family resilience, as evidenced by the divorce rate which did not increase significantly and was not caused by termination of employment. As for maintaining family resilience during the Covid-19 pandemic can be done by carrying out the rights and obligations of each family member in accordance with the study of Islamic family law, in addition to maintaining interpersonal communication between family members. </em></p>

scholarly journals Assessing the Impact of Growth Hormone Deficiency and Treatment in Adults: Development of a New Disease-Specific Measure

2014 ◽  
Vol 99 (4) ◽  
pp. 1204-1212 ◽  
Author(s):  
Meryl Brod ◽  
Lise Højbjerre ◽  
Johan Erpur Adalsteinsson ◽  
Michael Højby Rasmussen
Keyword(s):  
Growth Hormone ◽  
Item Response Theory ◽  
Growth Hormone Deficiency ◽  
Item Response ◽  
Outcome Measure ◽  
Gh Deficiency ◽  
Hormone Deficiency ◽  
Concept Elicitation ◽  
Development And Validation ◽  
The Impact

Context: Approximately 50 000 adults in the United States are diagnosed with GH deficiency, which has negative impacts on cognitive functioning, psychological well-being, and quality of life. Objective: This paper presents development and validation of a patient-reported outcome measure (PRO), the Treatment-Related Impact Measure-Adult Growth Hormone Deficiency (TRIM-AGHD). The TRIM-AGHD was developed to measure the impact of GH deficiency and its treatment. Design and Settings: The development and validation of the TRIM-AGHD was conducted according to the Food and Drug Administration guidance on the development of PROs. Concept elicitation, conducted in three countries included interviews with patients, clinical experts, and literature review. Qualitative data were analyzed based on grounded theory principles, and draft items were cognitively debriefed. The measure underwent psychometric validation in a US clinic-based population. An a priori statistical analysis plan included assessment of the measurement model, reliability, and validity. Item functioning was reviewed using item response theory analyses. Patients or Other Participants: Forty-eight patients and six clinical experts participated in concept elicitation and 169 patients completed the validation study. Main Outcome Measure: TRIM-AGHD was measured. Results: Factor analysis resulted in four domains: energy level, physical health, emotional health, and cognitive ability. The item response theory confirmed adequate item fit and placement within their domain. Internal consistency ranged from 0.82 to 0.95 and test-retest ranged from 0.80 to 0.92. All prespecified hypotheses for convergent validity and all but two for discriminant validity were met. Conclusions: The final 26-item TRIM-AGHD can be considered a reliable and valid PRO of the impact of disease and treatment for adult GH deficiency.

Family Narratives About Providing End-of-Life Care at Home

2021 ◽  
pp. 107484072110255
Author(s):  
Jesús Martín-Martín ◽  
Mercedes Pérez-Díez-del-Corral ◽  
Maddi Olano-Lizarraga ◽  
Socorro Valencia-Gil ◽  
María Isabel Saracíbar-Razquin
Keyword(s):  
Home Care ◽  
End Of Life ◽  
Family Member ◽  
Narrative Analysis ◽  
Interpersonal Relationship ◽  
Well Being ◽  
Individual Interviews ◽  
The Family ◽  
The Stability ◽  
The Impact

Currently, the dying process in Spain is moving to the home environment where responsibility for care falls largely on the family, thereby challenging and testing the stability of the family. Previous research has focused on the impact of illness on the primary caregiver; therefore, a knowledge gap exists. This study aimed to understand families’ unitary experiences of providing home care to terminally ill family member. Using the “ Model of Interpersonal Relationship Between the Nurse and the Person/Family Cared For,” narrative research included family and individual interviews with nine families (9 groups/23 individuals). Thematic narrative analysis was used to interpret the interviews. The results highlight the impact of illness on family well-being as a whole. Family members often felt abandoned while caring for an ill family member and wished to be cared for themselves. However, their immediate community and the nurses caring for their ill family member neglected them. A paradigm shift is required by society and in home care at the end of life to better support the family.

Family factors predicting self-rated health during early adolescence

2020 ◽  
pp. 140349482097228
Author(s):  
Eivind Meland ◽  
Hans Johan Breidablik ◽  
Frode Thuen
Keyword(s):  
Parental Support ◽  
Outcome Measure ◽  
Family Factors ◽  
Public Health Perspective ◽  
School Work ◽  
Self Rated Health ◽  
The Family ◽  
Logistic Method ◽  
The Impact ◽  
Health Impairments

Background: Health impairments in adolescents associated with divorce and loss of parental contact are frequently reported. However, other family factors more likely to promote health are less researched. We examined the impact of several family factors on self-rated health (SRH). Methods: A longitudinal cohort study of 1225 students in high school aged 11 and 13 years in 2011. The students were surveyed at onset and after 2 years with SRH as the outcome measure. We adjusted for sex, age and self-rated socioeconomic status in temporal causal analyses, and adjusted for SRH at onset in residual change analyses, applying an ordinal logistic method. Adjusted analyses with each factor and multivariable models with backward exclusion were performed. We reported the predictive associations with odds ratios and 95% confidence limits. Results: The most decisive factors predicting future positive SRH were linked to confidence in communicating with both parents about bothersome issues, and the experience of parental support with school work. Furthermore, the experience of opinions being taken seriously in the family and the absence of excessive parental expectations predicted SRH positively after 2 years. Divorce had a modest impact on SRH and was mediated by the other factors. Only the absence of contact with fathers moderated the effect that divorce experience had on SRH. We ascertained the causal relationships through residual change analyses. Conclusions: As SRH in adolescence has an impact on later health and is amendable, it is important, from a public health perspective, to preserve and improve relationships and confidence between children and both parents.

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