scholarly journals Family vitiligo impact scale: A scale to measure the quality-of-life of family members of patients with vitiligo

2021 ◽  
Vol 0 ◽  
pp. 1-8
Author(s):  
S. Agrawal ◽  
S. Satapathy ◽  
V. Gupta ◽  
V. Sreenivas ◽  
B. K. Khaitan ◽  
...  
Keyword(s):  
Qualitative Interviews ◽  
Group Discussion ◽  
Family Members ◽  
Psychosocial Impact ◽  
Good Test ◽  
Social Burden ◽  
Impact Scale ◽  
Scale Scores ◽  
Excellent Internal Consistency ◽  
Valid Instrument

Background: Vitiligo places a significant psycho-social burden on caregivers and family members. Aims: The aim of the study was to develop and preliminarily validate a scale to measure the psychosocial impact of vitiligo on adult family members. Methods: Themes that emerged from qualitative interviews and a focus group discussion with family members were used to generate items for a preliminary scale, followed by pre-testing and scale development. The new scale was then tested with two comparator scales and a global question. Results: A preliminary scale with 32 items was pilot tested on 30 participants. Following this, the scale was condensed to 16 items in 12 domains that were administered to 159 participants. Scale scores ranged from 0 to 48 with a mean of 19.75 ± 12.41. The scale had excellent internal consistency with Cronbach’s alpha coefficient of 0.92 (0.70–0.95) and also showed good test-retest reliability at two weeks (r = 0.946). The scale showed criterion, convergent and known group validity. Limitations: It was conducted in a large teaching hospital which may have resulted in selection of patients with persistent or progressive disease and more worried family members. Vitiligo is highly stigmatized in our country and the performance of the scale may need to be evaluated in other communities and cultures as well where stigma is less oppressive. Conclusion: Family Vitiligo Impact Scale appears to be an easy-to-complete, reliable and valid instrument to measure the psychosocial impact of vitiligo in family members of patients. It may be useful as an outcome measure in both clinical and research settings.

scholarly journals Psychological Consequences of the Delay in the Silent Mentor Programme During the COVID-19 Pandemic: Perspectives From Family Members of Silent Mentors

2021 ◽  
pp. 003022282110009
Author(s):  
Li Ping Wong ◽  
Sik Loo Tan ◽  
Haridah Alias ◽  
Thiam Eng Sia ◽  
Aik Saw
Keyword(s):  
Mental Health ◽  
Qualitative Interviews ◽  
Psychological Impact ◽  
Family Members ◽  
Well Being ◽  
The Body ◽  
Functional Health ◽  
Psychological Consequences ◽  
Negative Effect ◽  
Health And Well Being

The COVID-19 pandemic has put a hold on the Silent Mentor Programme (SMP); this pause has not only caused unprecedented challenges for the delivery of medical education but has forced changes in the programme ceremony sessions. We aimed to describe the psychological impact and experiences of family members of silent mentors during the COVID-19 pandemic using qualitative interviews. Many expressed feelings of remorse and unrest about the unprecedented delay of the SMP. The delay increased negative emotions particularly among some elderly family members; however, there was no prominent negative effect on their functional health and well-being. Several participants relayed the belief that the soul cannot rest until the body receives a proper burial while some worried about the deterioration of the physical condition of the mentors. In conclusion, findings provide insights into the importance of not overlooking the mental health implications of delaying the SMP in future outbreaks or crises.

scholarly journals Attitudes Toward Sexual Behaviors in Long-Term Care: Development of an Assessment Tool

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 602-603
Author(s):  
Rachael Spalding ◽  
Emma Katz ◽  
Barry Edelstein
Keyword(s):  
Sexual Behaviors ◽  
Long Term Care ◽  
Assessment Tool ◽  
Qualitative Interviews ◽  
Family Members ◽  
Community Dwelling ◽  
Term Care ◽  
Care Development

Abstract Most older adults living in long-term care settings (LTCs) indicate that expressing their sexuality is important to them (Doll, 2013). Little is known about the general public’s attitudes towards sexual behaviors in LTCs. Attitudes of LTC residents’ family members are particularly important, as family members are most likely to visit residents and to care about their quality of life. Family members’ attitudes could in turn inform facility policies and management. We will present preliminary data from a series of qualitative interviews with community-dwelling adults regarding their attitudes. We will discuss how these data are being used to inform current work on a measure of attitudes toward sexual behavior in LTCs.

scholarly journals A Qualitative Study on Emergency Healthcare Worker (EHCW) Perception towards COVID-ACLS Simulation Training in Resuscitating Suspected COVID-19 Patients

2021 ◽  
Vol 50 (9) ◽  
pp. 2847-2858
Author(s):  
Jebby Yii ◽  
Alias Mahmud ◽  
Azlan Helmy Abd Samat ◽  
Dazlin Masdiana Sabardin ◽  
Mohd Hisham Mohd Isa ◽  
...  
Keyword(s):  
High Risk ◽  
Group Discussion ◽  
Family Members ◽  
Safety Issues ◽  
High Risk Patients ◽  
Resuscitation Training ◽  
New Knowledge ◽  
Risk Patients ◽  
Protective Methods ◽  
Regular Training

The emergence of COVID-19 pandemic has caused difficulty to emergency-HCW (EHCW) in resuscitating high-risk patients. We set out to explore EHCW’s perception after undergoing COVID-ACLS resuscitation training and address their anxiety of working in this pandemic. A qualitative case study using focused group discussion was conducted among EHCW who have undergone COVID-ACLS training. Five semi-structured questions exploring respondent’s confidence level, anxiety factors, areas of improvement for COVID-ACLS and if this COVID-ACLS training is sufficient. Inductive and deductive thematic analysis approach was done to analyse the result. 20 EHCW participated in this study. Out of 4 themes, 11 subthemes were identified based on the respondents. They were acquired new knowledge, self-precaution, method of delivery, concerns of self and family members, stigmatisation, insufficient protective methods, underappreciation, regular training sessions, other modalities for learning, course duration; and unsatisfactory reading material. New knowledge and self-precaution were noted to be an important aspect that boosts confidence among EHCW. The main factor that increased anxiety was safety issues and disease spreading to family members, colleagues, and society. In conclusion, COVID-ACLS training is able to boost EHCW confidence in resuscitating high-risk patients. Factors leading to anxiety among EHCW should also be addressed during this pandemic to ensure psychological welfare and mental health are not affected. Regular training and utilisation of other teaching modalities such as video are perceived as a helpful adjunct in boosting their confidence. The utilisation of new training approach should be explored in enhancing EHCW’s knowledge and confidence.

End-of-Life Doulas: Documenting Their Backgrounds and Services

2021 ◽  
pp. 003022282110470
Author(s):  
Amy Dellinger Page ◽  
Jonelle H. Husain
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Qualitative Interviews ◽  
Family Members ◽  
Demographic Characteristics ◽  
Life Care ◽  
Healthcare Settings ◽  
Survey Results ◽  
Original Survey

This is an exploratory study to document the demographic characteristics, backgrounds, and services provided by trained and certified INELDA end-of-life doulas. Like birth doulas, end-of-life doulas represent a divergent, yet complementary form of care for dying persons. The purpose of end-of-life care is to facilitate comfort of the dying person and their closest family members. Surveys were completed by 618 end-of-life doulas regarding their demographic characteristics, employment backgrounds, services, and their experiences providing end of life care to dying persons and their closest family members. Follow-up qualitative interviews were also conducted with a subset of 39 respondents who completed the original survey. Results show that trained doulas are largely white (91.4%), female (90.4%), hold a Bachelor’s (32.3%) or Masters (32.4%) degree, and are employed outside of their EOLD work (70.1%). Qualitative data details services provided to dying persons and family members in addition to the benefits and challenges of working with traditional healthcare settings.

scholarly journals Testimonies of Communication in Dementia Care

2019 ◽  
Author(s):  
Grant D. Campbell ◽  
Nicole Dalmer ◽  
Jason Andrews
Keyword(s):  
Significant Role ◽  
Qualitative Interviews ◽  
Family Members ◽  
Dementia Care ◽  
Information Services ◽  
Professional Information

This paper presents a study of recorded conversations, qualitative interviews, and published memoirs to articulate the role of professional information services in answering the needs of persons caring for family members living with dementia. The data from these sources reveals evidence of working naïve classifications based on images of ritual, paradox, contrast, synchrony and stability. The findings suggest that information services need to align with caregivers’ working classifications, and that information, when appropriately delivered, plays a significant role in re-establishing temporary periods of stability in the caregiving relationship.

scholarly journals Collaborating to co-produce strategies for delivering adolescent sexual and reproductive health interventions: processes and experiences from an implementation research project in Nigeria

2020 ◽  
Vol 35 (Supplement_2) ◽  
pp. ii84-ii97
Author(s):  
Chinyere Ojiugo Mbachu ◽  
Ifunanya Clara Agu ◽  
Obinna Onwujekwe
Keyword(s):  
Reproductive Health ◽  
Sexual And Reproductive Health ◽  
Qualitative Interviews ◽  
Group Discussion ◽  
Implementation Strategies ◽  
Design Strategies ◽  
Secondary Sources ◽  
Key Stakeholders ◽  
Academic Researchers ◽  
Document Review

Abstract Implementation science embraces collaboration between academic researchers and key stakeholders/implementers for the dual purpose of capacity building and context-adaptation. Co-production ensures that knowledge created with inputs from various groups of stakeholders is more reflective of local contexts. This paper highlights the experiences of academic researchers and non-academic implementers in collaborating to design implementation strategies for improving access to sexual and reproductive information and services for adolescents. Data were collected through primary and secondary sources. Detailed review of project documents such as minutes of research meetings, reports of workshops and outputs of group work activities enabled detailed description of the processes and steps of co-designing implementation strategies. Information on experiences and perspectives of benefits of the collaborative were collected through in-depth interviews of non-academic partners and focus group discussion with academic researchers. Narrative synthesis was done for information extracted through document review. Thematic analysis of qualitative interviews was done. The process of designing implementation strategies happened in three chronological steps of setting up the collaborative, selecting intervention areas and convening partners’ meetings to design strategies. Specific activities include stakeholder engagement, situation analysis, selection of intervention areas, designing the implementation strategies and pre-testing implementation tools. The process of analysing and selecting collaborators was iterative, and facilitated by having an ‘insider’ key informant. Working with key stakeholders enabled knowledge sharing and exchange among partners. Information sharing within the collaborative facilitated shifting of mindsets about adolescent sexual and reproductive health, and contextual adaptation of names and labels given to strategies. Co-producing implementation strategies with non-academic implementers enabled stakeholder ownership of implementation strategies and set the scene for their adoption in implementation settings. Some challenges of co-production of knowledge are that it is time consuming; involves several iterations that may influence coherence of strategies; involves multiple interests and priorities and poses a threat to fidelity.

Psychometric Properties of the Brief Persian Version of the Difficulties in Emotion Regulation Scale (The DERS-16)

2018 ◽  
Vol 45 (2) ◽  
pp. 135-143 ◽  
Author(s):  
Mehrnesa Shahabi ◽  
Jafar Hasani ◽  
Johan Bjureberg
Keyword(s):  
Factor Analysis ◽  
Emotion Regulation ◽  
Concurrent Validity ◽  
Reliability And Validity ◽  
Good Test ◽  
Persian Version ◽  
Difficulties In Emotion Regulation ◽  
Confirmatory Factor ◽  
Excellent Internal Consistency ◽  
Test Retest Reliability

The Difficulties in Emotion Regulation Scale (DERS) is an established self-reported measure of emotion regulation difficulties. Recently, a brief 16-item version of this scale—the DERS-16—was developed. The goal of the present study was to extend the research on the DERS-16 by evaluating the reliability and validity of the Persian version in a university sample ( N = 201). Results demonstrate that the Persian DERS-16 demonstrated excellent internal consistency, good test–retest reliability, and good concurrent validity. Furthermore, confirmatory factor analysis (CFA) supported the proposed factor structure. Thus, the Persian DERS-16 may offer a valid method for the assessment of overall emotion regulation difficulties as well as for the different facets of the construct.

An investigation of the perspectives of low-income Latina mothers with preschoolers transitioning to kindergarten

2020 ◽  
pp. 146879842090182 ◽  
Author(s):  
Sarai Coba-Rodriguez ◽  
Robin L Jarrett
Keyword(s):  
Emergent Literacy ◽  
Low Income ◽  
Literacy Development ◽  
Qualitative Interviews ◽  
Family Members ◽  
Literacy Skills ◽  
Latina Mothers ◽  
Quantitative Studies ◽  
Demographic Risk ◽  
Demographic Risk Factors

Research in the United States (U.S.) documents that young Latino children whose families are characterized by demographic risk factors disproportionately lack the early literacy skills needed to successfully transition to kindergarten. Quantitative studies using comparative samples have found lower quality home learning environments and lower scores on a child outcome assessments among Latino children compared to their Black and White peers. A small body of qualitative, non-comparative studies that focus on Latino families in their own right provides descriptive accounts of the positive ways that Latina mothers and other family members promote child literacy development, despite being characterized by demographic risk factors. However, the social address variables utilized in quantitative studies limit our understanding of the family processes affecting child literacy development, and most qualitative studies focus on older, school-aged children with very few studies focusing on the early transitional period before kindergarten, especially for Latinos. Addressing current gaps in the literature on preschool-aged children, we conducted in-depth qualitative interviews and photo-elicitation interviews with 17 low-income Latina mothers of Head Start preschoolers in a northern Chicago suburb in the U.S. Privileging mothers’ voices and experiences, we explored their in-home emergent literacy practices and the role of other family members in promoting children’s literacy development. Informed by a family resilience framework, we accessed intimate family worlds that reveal highly engaged and resilient parents. Specifically, we identified numerous child literacy skills that families supported through an array of family instructional practices and tools. We further identified the role of various available family members, particularly fathers and siblings. These findings add to substantive discussions of emergent literacy, resilience and familismo. Insights from the qualitative interviews lead to recommendations for how early childhood educators can capitalize on families’ funds of knowledge, and view them as valued collaborators.

scholarly journals ADVANCING THE MEASUREMENT OF INTERGENERATIONAL CONTACT: BEYOND ATTITUDES TOWARD AGING

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S626-S626
Author(s):  
Shelbie Turner ◽  
Karen Hooker ◽  
Shannon E Jarrott
Keyword(s):  
Older Adults ◽  
Family Members ◽  
Intergenerational Relationships ◽  
Intergenerational Relationship ◽  
Comprehensive Theory ◽  
Age Related ◽  
Valid Instrument ◽  
Intergenerational Interactions ◽  
Nuanced Understanding ◽  
Over Time

Abstract In our presentation, we will offer insights into our process of creating and validating a comprehensive theory- and evidence- informed measure of intergenerational contact that expands beyond the measurement of age-related attitudes. While attitudinal shifts are an important construct related to intergenerational contact and its impact on ageism, efforts to “Reframe Aging” require a more nuanced understanding of the mechanisms by which intergenerational contact can have positive impacts on individuals, families, and communities. Intergenerational contact is dynamic; it varies both between- and within- people, dyads, and places, as well as over time. Our measure includes quantity and qualities of intergenerational contact, including the extent to which the contact is between family vs. non-family members. Unlike existing measures of intergenerational relationship, ours reflects young persons’ and older adults’ intergenerational relationships. A psychometrically valid instrument of intergenerational contact is an essential first-step for determining how aging can be reframed through intergenerational interactions.

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