scholarly journals O017 Parents’ experiences of having a child with Down Syndrome and sleep difficulties

2021 ◽  
Vol 2 (Supplement_1) ◽  
pp. A8-A8
Author(s):  
M Miguel ◽  
E Cooke ◽  
J Chawla
Keyword(s):  
Down Syndrome ◽  
Qualitative Study ◽  
Family Dynamics ◽  
Well Being ◽  
Time Function ◽  
Family Quality Of Life ◽  
Specific Information ◽  
Structured Interviews ◽  
Sleep Difficulties ◽  
Parents Experiences

Abstract Introduction This qualitative study that investigates parents’ experiences of having a child with Down Syndrome (DS) and sleep difficulties is a part of a broader mixed-method study entitled Sleep Difficulties in Children with Down Syndrome: An Evaluation of Parent/Carer and Family Quality of Life. Methods We conducted semi-structured interviews with 26 parents (fathers n = 4 and mothers n = 22), and reflexive Thematic Analysis (TA) was operationalised for data analysis. The interviews covered the following key topics: DS diagnosis; timeline of their child’s sleep patterns and difficulties; implications for parental sleep, day-time function, and well-being; family dynamics; and access to supports. Results Most participants described negative experiences at time of diagnosis, including not feeling listened to, and receiving inconsistent, insensitive and inadequate information and/or treatment. Most strikingly, no parents recall receiving sleep specific information. Most participants described their child’s sleep difficulties affecting their own sleep, day-time function and family dynamics, yet they commonly normalised these experiences. Such normalisation was a recurring theme across their experiences of having a child with DS and is contextualised by their accounts of resisting prejudiced attitudes towards their child since diagnosis. Discussion This is the first qualitative study to investigate parents’ experiences of having a child with DS and sleep difficulties. Implications include professional development for health care workers focusing on sleep as a significant comorbidity for these children, and awareness of families’ tendencies to normalise their experiences when delivering care.

scholarly journals Protective and Risk Factors of Italian Healthcare Professionals during the COVID-19 Pandemic Outbreak: A Qualitative Study

2021 ◽  
Vol 18 (2) ◽  
pp. 453
Author(s):  
Amalia De Leo ◽  
Eloisa Cianci ◽  
Paolo Mastore ◽  
Caterina Gozzoli
Keyword(s):  
Risk Factors ◽  
Qualitative Study ◽  
Extrinsic Motivation ◽  
Healthcare Professionals ◽  
Well Being ◽  
Organizational Level ◽  
Emotional Impact ◽  
Snowball Sampling ◽  
Structured Interviews ◽  
Interpersonal Level

The COVID-19 pandemic put the Italian health system under great stress. The sudden reorganization of work practices and the emotional impact of the large number of the victims had many consequences on the well-being of the healthcare professionals (HCPs) involved in managing the crisis. In the available literature, most studies have focused on the risk aspects while only few studies also take into account protective factors. For this reason, it was decided to conduct, within psycho-sociological perspective, a qualitative study with the aim to explore in depth the protective and risk factors as experienced by HCPs who worked in the Italian healthcare system during the COVID-19 outbreak. A total of 19 semi-structured interviews were conducted with HCPs–9 nurses and 10 physicians (7M and 12F) with an average age of 43 (SD = 13.4)–selected using snowball sampling. Considering three different levels of analysis the results highlight the protective and risk factors: personal history level (intrinsic/ethical motivation and flexible role versus extrinsic motivation and static role), interpersonal level (perception of supportive relationships with colleagues, patients, and family versus bad relationships), and organizational level (good leadership and sustainable work purpose versus absence of support from management and undefined or confused tasks).

scholarly journals The impact of sleep disturbances on care home residents with dementia: the SIESTA qualitative study

2020 ◽  
Vol 32 (7) ◽  
pp. 839-847
Author(s):  
Lucy Webster ◽  
Kingsley Powell ◽  
Sergi G. Costafreda ◽  
Gill Livingston
Keyword(s):  
Qualitative Study ◽  
Sleep Disturbance ◽  
Sleep Disturbances ◽  
Care Home ◽  
Well Being ◽  
Structured Interviews ◽  
Topic Guide ◽  
Disturbed Sleep ◽  
Risk Of Falls ◽  
The Impact

ABSTRACTObjectives:Nearly 40% of care home residents who are living with dementia also have symptoms of disturbed sleep. However, the impact of these disturbances is relatively unknown and is needed to indicate whether interventions are warranted; therefore, we aimed to investigate the impact.Design:One-to-one semi-structured interviews.Settings:Four UK care homes.Participants:We interviewed 18 nurses and care assistants about residents with sleep disturbances.Measurements:We used a topic guide to explore staff experience of sleep disturbance in residents with dementia. The interviews were audio recorded and transcribed and then analyzed thematically by two researchers independently.Results:Staff described that sleep disturbances in most, but not all, residents impacted negatively on the resident, other residents, staff, and relatives. Residents became more irritable or agitated if they had slept badly. They slept in the daytime after a bad night, which then increased their chances of being awake the following night. For some, being sleepy in the day led to falls, missing medication, drinks, and meals. Staff perceived hypnotics as having low efficacy, but increasing the risk of falls and drowsiness. Other residents were disturbed by noise, and staff described stress when several residents had sleep disturbance. Some of the strategies reported by staff to deal with sleep disturbances such as feeding or providing caffeinated tea at night might be counterproductive.Conclusions:Sleep disturbances in care home residents living with dementia negatively affect their physical and psychological well-being. These disturbances also disturb other residents and increase stress in staff.

scholarly journals Solidarity, Vulnerability and Mistrust: How Context, Information and Government Affect the Lives of Women in Times of Zika

2019 ◽  
Author(s):  
Ana Rosa Linde Arias ◽  
Maria Roura ◽  
Eduardo Siqueira
Keyword(s):  
Public Health ◽  
Qualitative Study ◽  
Well Being ◽  
The United States ◽  
Epidemiological Surveillance ◽  
Sources Of Information ◽  
Snowball Sampling ◽  
Structured Interviews ◽  
Public Health Response ◽  
Individual Level

Abstract Background and Objectives The public health response to Zika outbreak has mostly focused on epidemiological surveillance, vector control, and individual level preventative measures. This qualitative study employs a social-ecological framework to examine how macro (historical, legislative, political, socio-economic factors), meso (sources of information, social support, social mobilization) and micro level factors (individual actions, behavioral changes) interacted to influence the response and behavior of women with respect to Zika in different contexts. Methods A qualitative study was carried out. Women were recruited through the snowball sampling technique from various locations in Brazil, Puerto Rico, and the United States. They were of different nationalities and ethnicities. Data were collected through semi-structured interviews. The data transcripts were analyzed using thematic analysis. Results Women in this study deemed the information provided as insufficient, which led them to actively reach out and access a variety of media sources. Social networks played a vital role in sharing information but also resulted in the spread of hoaxes or rumors. Participants in our research perceived socio-economic inequities but focused on how to remedy their microenvironments. They did not engage in major social activities. Lack of trust in governments placed women in vulnerable situations by preventing them to follow the guidance of health authorities. These impacts were also a result of the response tactics of health and government administrations in their failed attempts to ensure the well-being of their countries’ populations. Conclusions Our findings call for a broad spectrum of public health interventions that go beyond individual level behavioral change campaigns, to more comprehensively address the broader meso and macro level factors that influence womens’ willingness and possibility to protect themselves.

scholarly journals Challenges with social distancing during the COVID-19 pandemic among Hispanics in New York City: a qualitative study

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Christopher J. Gonzalez ◽  
Bryan Aristega Almeida ◽  
George S. Corpuz ◽  
Hector A. Mora ◽  
Oluwatobi Aladesuru ◽  
...  
Keyword(s):  
New York ◽  
Qualitative Study ◽  
Community Health Center ◽  
Health Belief ◽  
Well Being ◽  
The United States ◽  
Structured Interviews ◽  
Social Distancing ◽  
Unpaid Care ◽  
Hispanic Adults

Abstract Background Hispanics in the United States are disproportionately affected by the novel coronavirus (COVID-19). While social distancing and quarantining are effective methods to reduce its spread, Hispanics, who are more likely to be essential workers and live in multigenerational homes than non-Hispanics, may face challenges that limit their ability to carry out these preventative efforts. We elicited the experiences of Hispanic adults with social distancing and self-quarantining during the COVID-19 pandemic in New York. Methods In this qualitative study, Hispanic adults receiving care at a federally qualified community health center in East Harlem, New York, were recruited for remote one-on-one semi-structured interviews from 5/15/2020 to 11/17/2020. Interviews were conducted by a bilingual interviewer in Spanish or English, using a semi-structured topic guide informed by the Health Belief Model. Audio-recordings were professionally transcribed. We used thematic analysis to iteratively code the data. Each transcript was independently coded by two research team members, then reconciled by a third. Major themes and subthemes were identified. Results Among 20 participants, four major themes emerged; Hispanics were: (1) fearful of contracting and transmitting COVID-19, (2) engaging in practices to reduce transmission of COVID-19, (3) experiencing barriers to social distancing and quarantining, and (4) facing an enduring psychological and physical toll from COVID-19. Conclusions Despite understanding the risks for contracting COVID-19 and taking appropriate precautions, Hispanics faced numerous challenges to social distancing and quarantining, such as living in crowded, multi-generational households, working as essential workers, and providing unpaid care to family members. Such challenges took a toll on their physical, emotional, and financial well-being. Our findings suggest that a tailored approach to public health messaging and interventions for pandemic planning are warranted among members of this community. Further research is needed to understand and mitigate the long term physical and psychological consequences of the pandemic among Hispanics.

scholarly journals The journey of having scabies–A qualitative study

2018 ◽  
Vol 9 (2) ◽  
pp. 1 ◽  
Author(s):  
Bettina Trettin ◽  
Jette Amstrup Lassen ◽  
Flemming Andersen ◽  
Hanne Agerskov
Keyword(s):  
Qualitative Study ◽  
Social Withdrawal ◽  
Well Being ◽  
World Health ◽  
Repeated Treatment ◽  
Structured Interviews ◽  
Long Period ◽  
Lack Of Information ◽  
Common Skin ◽  
Health Organization

Background and objective: Scabies is considered to be a common skin infection in the field of dermatology, but it is also, by the World Health Organization referred to as a neglected disease. It can cause complications such as secondary infections linked to the development of glomerulonephritis and chronic kidney disease. Furthermore, scabies is associated with stigma, shame and social isolation. To date no qualitative study, has explored this area in depth. The aim of this study was to gain an in-depth understanding of the lived experiences of patients diagnosed with scabies.Methods: A phenomenological-hermeneutic approach was applied and semi-structured interviews were conducted with 10 participants with scabies. Data were analyzed according to Ricoeurs’ theory of interpretation: naïve reading, structural analysis and critical interpretation and discussion.Results: The study revealed that patients were affected by uncontrollable and unbearable itching, which caused insomnia and distress, and lead to coping strategies to bring relief. Scabies was experienced as a never-ending journey, characterized by misdiagnosis, a long period of repeated treatment, and lack of information. Not knowing whether the disease had been cured resulted in feelings of insecurity and powerlessness. Scabies had an impact on everyday life caused by social withdrawal and due to feelings of shame, guilt and fear of rejection.Conclusions: Having scabies is a journey that consists of uncertainty and is characterized by misdiagnosis, long period of treatment and lack of knowledge. Having scabies can be stigmatized, causing loneliness and social withdrawal. Patients with scabies are in need of care, support and information regarding physical, emotional and social well-being.

scholarly journals Living with the Memories—Parents’ Experiences of Their Newborn Child Undergoing Heart Surgery Abroad: A Qualitative Study

2020 ◽  
Vol 17 (23) ◽  
pp. 8840
Author(s):  
Ólöf Kristjánsdóttir ◽  
Annica Sjöström-Strand ◽  
Gudrún Kristjánsdóttir
Keyword(s):  
Content Analysis ◽  
Qualitative Study ◽  
Heart Surgery ◽  
Qualitative Content Analysis ◽  
Interdisciplinary Teams ◽  
Stressful Event ◽  
Structured Interviews ◽  
Vulnerable Families ◽  
Newborn Child ◽  
Parents Experiences

Parents of children with a congenital heart defect needing complex heart surgery are at high risk of developing health problems. One can assume that parents whose child undergoes heart surgery abroad will undoubtably face added and unique stressors and health vulnerabilities. The aim of this qualitative study was to explore the transition experiences of parents of children who underwent a complex heart surgery abroad as newborns 1–5 years ago. The qualitative content analysis methodology by Graneheim and Lundman was used. A purposive sample of twelve parents, whose child had undergone a heart surgery abroad, participated in face-to-face, semi-structured interviews. Interviews were transcribed and analyzed using inductive qualitative content analysis. The overarching theme of “living with the memories” emerged from parents’ experiences, emphasizing the long-lasting impact this stressful event had on their lives. These experiences were characterized by four main categories: (1) being in an unknown situation; (2) feeling connected; (3) wishing to be accepted; and (4) finding closure. The findings show that the transition of having a newborn child undergo heart surgery abroad superimposed on the expected parenthood. That parents need to feel connected and included as legitimate clients was highlighted in their stories of experienced vulnerabilities. The results highlight the need for interdisciplinary teams to support these vulnerable families, particularly with follow-up care.

scholarly journals What Does it Mean to be a Targeted Parent? Parents’ Experiences in the Context of Parental Alienation

2021 ◽  
Vol 30 (5) ◽  
pp. 1370-1380
Author(s):  
Ana Tavares ◽  
Carla Crespo ◽  
Maria Teresa Ribeiro
Keyword(s):  
Coping Strategies ◽  
Family Relationships ◽  
Well Being ◽  
Negative Influence ◽  
Social Contexts ◽  
Support Network ◽  
Structured Interviews ◽  
Parental Alienation ◽  
Personal Impact ◽  
Parents Experiences

AbstractThe term parental alienation refers to the negative influence of one parent over a child’s perception of the other parent (targeted parent). The aim of this research was to gain further understanding of targeted parents’ experience of parental alienation from their own perspectives. For this qualitative study, a thematic analysis of semi-structured interviews with eight participants aged between 33 and 51 years was conducted. The data from individual semi-structured interviews enabled the identification of four main themes: perception of personal impact, coping strategies, family relationships and support network. Parents identified a serious impairment of their physical and emotional well-being and mainly identified emotion-focused coping strategies to deal with this adverse ongoing situation. Furthermore, they reported changes in key relationships, with emphasis on difficulties in family and social contexts. The contribution of the findings to research and interventions with parents and families experiencing parental alienation are discussed.

scholarly journals Exploring maintenance of physical activity behaviour change among people living with and beyond gastrointestinal cancer: a cross-sectional qualitative study and typology

BMJ Open ◽  
2020 ◽  
Vol 10 (10) ◽  
pp. e037136
Author(s):  
Chloe Grimmett ◽  
Claire Foster ◽  
Katherine Bradbury ◽  
Phillippa Lally ◽  
Carl R May ◽  
...  
Keyword(s):  
Physical Activity ◽  
Qualitative Study ◽  
Intervention Development ◽  
Well Being ◽  
Rapid Expansion ◽  
Structured Interviews ◽  
Cross Sectional ◽  
Gi Cancer ◽  
The Impact

ObjectivesIn the last decade, there has been a rapid expansion of physical activity (PA) promotion programmes and interventions targeting people living with and beyond cancer (LWBC). The impact that these initiatives have on long-term maintenance of PA remains under-researched. This study sought to explore the experiences of participants in order to characterise those who have and have not successfully sustained increases in PA following participation in a PA intervention after a diagnosis of gastrointestinal (GI) cancer, and identify barriers and facilitators of this behaviour.DesignCross-sectional qualitative study. Semi-structured interviews with participants who had previously taken part in a PA programme in the UK, explored current and past PA behaviour and factors that promoted or inhibited regular PA participation. Interviews were audio-recorded, transcribed verbatim and analysed using thematic analysis. Themes and subthemes were identified. Differences between individuals were recognised and a typology of PA engagement was developed.ParticipantsTwenty-seven individuals (n=15 male, mean age=66.3 years) with a diagnosis of GI cancer who had participated in one of four interventions designed to encourage PA participation.SettingUK.ResultsSeven themes were identified: disease processes, the role of ageing, emotion and psychological well-being, incorporating PA into everyday life, social interaction, support and self-monitoring and competing demands. A typology with three types describing long-term PA engagement was generated: (1) maintained PA, (2) intermittent PA, (3) low activity. Findings indicate that identifying an enjoyable activity that is appropriate to an individual’s level of physical functioning and is highly valued is key to supporting long-term PA engagement.ConclusionThe typology described here can be used to guide stratified and personalised intervention development and support sustained PA engagement by people LWBC.

scholarly journals Evaluation of a sitting light volleyball intervention: a social-ecological approach

2019 ◽  
Author(s):  
Ka Man Leung ◽  
Pak-Kwong Chung ◽  
William Chu
Keyword(s):  
Qualitative Study ◽  
Ecological Model ◽  
Self Regulation ◽  
Community Setting ◽  
Well Being ◽  
Organizational Level ◽  
Structured Interviews ◽  
Intervention Programme ◽  
Social Ecological ◽  
The Government

Abstract Background This study was part of a 15-week sitting light volleyball (SLVB) intervention programme which examined the effectiveness of the intervention on physical and psychological attributes of people with physical disabilities (PWPD) in Hong Kong. Gaining an in-depth understanding of the perceptions and experiences of PWPD in the SLVB intervention is critical to further develop SLVB as a PA intervention and sport. This qualitative study explored and examined the association between the SLVB intervention elements and outcomes. Methods Using a social–ecological model (SEM), the participants’ experiences regarding the intervention were assessed and the suitability and feasibility of the SLVB intervention elements were examined. Twenty participants (mean age = 53.52 years standard deviation (SD = 9.02), 60% female participants; 25% had at least a college degree) attended our semi-structured interviews. Results Using thematic analysis, their experiences at the individual or intrapersonal level (improved health and well-being, enjoyment, novelty, competence autonomy, and self-regulation when playing SLVB); relationship or interpersonal levels (teamwork, social support, socialization, and communication); perceived environment level (comfort, privacy, spaciousness, and accessibility concerns); community or organizational level (safety, dissemination of information, and community facilities); and policy level (resources allocation by the government) were obtained. The participants also commented on the suitability of the SLVB intervention for PWPD, contents and coaching, modified rules, duration of session and scheduling, and number of participants and coaches. Conclusion This qualitative study identified several primary drivers and barriers for engaging PWPD in SLVB, and demonstrated that adopting a multilevel approach to our SLVB intervention has positive outcomes. Our results can facilitate the development of the experiential aspects of SLVB and indicate the suitability and feasibility of organizing SLVB-related activities in a community setting in the future.

scholarly journals Qualitative study on mental health and well-being of Syrian refugees and their coping mechanisms towards integration in the UK

BMJ Open ◽  
2021 ◽  
Vol 11 (8) ◽  
pp. e046065
Author(s):  
Priyamvada Paudyal ◽  
Mais Tattan ◽  
Maxwell J F Cooper
Keyword(s):  
Mental Health ◽  
Qualitative Study ◽  
Cultural Difference ◽  
Mental Health Problems ◽  
Community Support ◽  
Well Being ◽  
Healthcare Services ◽  
Coping Mechanisms ◽  
Syrian Refugees ◽  
Structured Interviews

ObjectiveThis study aimed to explore the mental well-being of Syrian refugees and identify their coping mechanisms and pathways towards integration into new communities.DesignQualitative study using in-depth semi-structured interviews.Setting and participantsAdult Syrian refugees (>18 years old) currently residing in South East of England.Results12 participants (3 women and 9 men) took part in the study, all were born in Syria and the majority (n=9) were over 45 years of age. Our findings show that Syrian refugees face constant challenges as they try to integrate into a new society. Loss of and separation from loved ones as well as the nostalgia for the homeland were often cited as a source of psychological distress that created an overwhelming sense of sadness. Participants reported that they struggled for connectedness due to cultural difference and the problematic nature of rapidly formed migrant communities in their new setting. They believed in ‘being their own doctor’ and turning to faith, ritual and nature for healing and comfort. Taboo and stigma around mental health and language barriers were cited as barriers to accessing mental healthcare services.ConclusionPast experiences and present challenges frame Syrian refugees’ sense of well-being, impact use of healthcare and risk future mental health problems. It is hoped that this study will act as a catalyst for further research on this vulnerable group to promote integration, community support and culturally sensitive mental health services.

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