The Experiences of Family Members of COVID-19 Patients in Iran: A Qualitative Study

BackgroundBeing diagnosed with coronavirus disease-19 (COVID-19) usually causes emotional stress for patients and their families. Understanding the challenges faced by family members of COVID-19 patients is necessary to provide holistic family centered care to support patients and families on their journey to recovery from COVID-19. The aim of this study was to explore the experiences of Iranian family members of COVID-19 patients.MethodsThis qualitative study was performed using the conventional content analysis approach in 2020 in Gorgan, northeastern Iran. Using a purposive sampling 15 family members of inpatient and outpatient COVID-19 patients who were involved in caring of their patients were selected. Data were collected using in-depth and semi-structured interviews and were analyzed by Graneheim and Lundman''s content analysis method with the support of MAXQDA software.ResultsFamily members'' experiences of COVID-19 patients were categorized into two main themes, four category and 10 subcategories. One of the main themes was “psychosocial distress”, with two categories of “uncertainty of the disease” and “perceived psychosocial burdens”. Another main theme was “adaptation strategies”, with the two sub-categories including “adaptative care” and “trusting God”.ConclusionThe results of this study provide a broad range of context-specific challenges faced by family members of Covid-19 patients. It is essential for healthcare providers to be aware of the complex psychological and social conditions of families of Covid-19 patients. Hence, healthcare managers and policymakers should implement preventive and supportive programs at all levels in hospitals and community and provide supportive strategies to reduce or eliminate their challenges.     

The social impact of asthma

While much research has examined the aetiology and treatment of asthma, little work has been done on its social impact. Yet asthma, like any disease, has a social as well as a medical dimension and it is increasingly being recognized that these two dimensions are interlinked. This paper describes a study into the social and personal impact of asthma on the lives of sufferers and their families. It shows that people are affected in many different ways: in employment, schooling, physical activities, social interaction, personal relationships and emotional well-being. All of the people interviewed had experienced some impact on their lives, albeit to varying degrees. The overall social impact was positively correlated with the severity of the asthma itself; this correlation was statistically significant in the case of adults and children under school age.     

Listening to lupus patients and families: fine tuning the assessment

Given the chronicity and uncertainty of lupus, patients and their family members will face physical, financial, social, and emotional challenges that can be overwhelming. This article records the experiences of three different families affected by lupus. Although these patients and families are very different, their perspectives identify common emotional challenges. Understanding these experiences from their perspectives can help facilitate an assessment that is highly attuned to the potential psychosocial impact of lupus on the patient and the family.     

What do we know about transgender parenting?: Findings from a systematic review

Transgender issues are under‐explored and marginalised within mainstream social work and social care professional practice. The experience of gender transition has a profound impact on the individuals who have diverse gender identities and their family members. We present findings from a systematic review of studies concerning the experiences of transgender parenting conducted during January–September 2017. We took a life course approach, examining the research studies that investigated the experience of people identifying as transgender, who were already parents at the time of their transition or who wished to be parents following transition. The review evaluated existing findings from empirical research on transgender parenting and grandparenting to establish how trans people negotiate their relationships with children following transition, and sought to consider the implications for professional practice with trans people in relation to how best to support them with their family caring roles. We used the Preferred Reporting Items for Systematic Review and Meta‐Analyses (PRISMA) method. Empirical studies published from 1 January 1990 to 31 April 2017 in the English language, and which had transgender parenting as a significant focus, were included in the review. Twenty‐six studies met the criteria. Key themes reported are: how trans people negotiate their relationships with children following disclosure and transition; the impact of parental transitioning on children; relationships with wider families; trans people's desires to be parents; and the role of professional practice to support trans families. We discuss how the material from the review can inform social work education and practice, including to help identify future research, education and practice priorities in this area.     

Family Social Capital: Links to Weight-Related and Parenting Behaviors of Mothers with Young Children

Family social capital includes the social relationships, values, and norms shared by a family and is positively linked with children’s mental and physical health status. This cross-sectional study addresses a gap in the literature related to family social capital vis-à-vis weight-related behaviors and home environments of 557 mothers and their young children (ages 2 to 9 years). Mothers completed an online survey comprised of valid, reliable questionnaires assessing family relationships and weight-related behavioral and home environment measures. The measures that determined family social capital (i.e., supportive, engaged parenting behaviors; family cohesion; family conflict; and family meal frequency) yielded distinct tertile groups that differed significantly (p < 0.001) on every family social capital measure with large effect sizes. Analysis of variance with Tukey post-hoc test revealed greater family social capital was linked to significantly better maternal health, dietary intake, physical activity, and sleep behavior. Additionally, maternal modeling of healthy eating and physical activity, child feeding practices, and home environments was higher in groups with greater family social capital. Child mental and physical health, physical activity, and sleep quality were better in families with greater family social capital. Findings suggest greater family social capital is linked to healthier weight-related behaviors and home environments. Future intervention studies should incorporate strategies to build family social capital and compare longitudinal outcomes to traditional interventions to determine the relative value of family social capital on health behaviors.     

A qualitative study of parents' experiences using family support services: applying the concept of surface and depth

United Kingdom policy and practice endorses family support for child well‐being. Achieving such support requires multi‐agency approaches that consider all aspects of parents' and children's lives and which offer practical, social and emotional help. The potential for services to make a positive impact on parents and their families will depend in part on the level and nature of engagement. In this paper, a case is made for the application of the two‐part surface and depth concept for understanding how practitioners engage with families and how they might improve the chances of supporting sustainable differences for parents and families. To illustrate, qualitative data from a review of family centre support provided by a north of England local authority are presented. The review was commissioned to explore why families often need to re‐engage with intensive support services. Data were drawn from interviews with parents (n = 18, recruited following a survey of all those registered with the service during April–May 2009) and discussions with family centre support workers (n = 4), and following thematic analysis, three dominant themes emerged – resources available, staff approach and real life – which were appraised in the light of the surface and depth concept. Much of the work with parents effectively dealt with pressing needs. This felt gratifying for both parent and worker and supported immediate service engagement. However, each noted that the more complex issues in parents' lives went unchallenged and thus the sustainability of progress in terms of parenting practice was questionable. A strengths focused approach by staff that understood needs in the context of parents' real‐life circumstances was important to parent engagement. Thus, longer term benefits from family support require practitioners to work with parents to problem solve immediate issues while also digging deeper to acknowledge and seek to resolve the more complex challenges parents face in their real lives.     

The Impact of Drought on the Emotional Well-Being of Children and Adolescents in Rural and Remote New South Wales

ABSTRACT:  Context and Purpose: Between 2002 and 2006 New South Wales was in the grip of the worst drought for more than 100 years. Financial hardships have led governments to declare "Exceptional Circumstances." Little social research has investigated the impact of drought on children. For this study, children from rural and remote regions of New South Wales were asked for their interpretations of the impacts of drought on their lives. Methods: A multi-strategy approach combining qualitative and quantitative approaches was used to reveal deeper understanding of the impacts of drought. Students in Years 5 through 12 from six Central Schools in the rural southwest of New South Wales participated in focus groups and completed self-report questionnaires. Results: Quantitative self-reports indicated these students were not significantly more distressed than Australian norms. However, the themes that emerged from the students' statements indicated that the drought had been a very significant event for them. This qualitative information also indicated connections for these students to their families, schools, and communities. Conclusions: The emotional impacts of changes to family and community life appear to have been moderated by these students' positive attitudes toward their country lifestyle. These students have discussed the impact of drought on their environment, their livestock, financial resources, and their families. In the face of declining rural community networks, children should be supported through programs that maintain resilience in the face of recurring environmental stressors.     

he impact of Gaucher disease and its treatment on quality of life

To obtain information about how Gaucher disease and its treatment, specifically enzyme replacement therapy, affect patients' health-related quality of life (HRQoL), we interviewed 16 patients with type I Gaucher disease (range 8–67 years). All but three patients had been receiving enzyme replacement therapy for at least 6 months. The quality of life factors examined for these patients included physical health, social life, emotional health, financial burden, future plans and satisfaction with health care. The results indicated that bone pain and chronic fatigue interfered with school, job and social activities and were the most debilitating symptoms of Gaucher disease. Most patients experienced a significant increase in energy level from therapy and reported significant improvements in quality of life. Most patients did not perceive an effect of Gaucher disease on their overall emotional health, but some patients expressed anxieties about the discomfort, inconvenience and high costs of therapy. We conclude that a measure of HRQoL for Gaucher patients should include a generic core of items supplemented by disease-specific items designed to assess the changes in symptoms and in the occupational, recreational, social and emotional aspects of patients' lives that occur as a result of disease progression and/or management.     

Parents' experiences of caring for a child with a cleft lip and/or palate: a review of the literature

This review brings together for the first time the existing quantitative and qualitative research evidence about the experiences of parents caring for a child with a cleft. It summarizes salient themes on the emotional, social and service-related experiences of parents and critiques the literature to date, comparing it with wider, selected literature from the field of children's long-term conditions, including disability. The review suggests that there are similarities and differences between the literatures, in terms of research focus and approach. Similarities are found across children's conditions in the perspectives of parents on emotional, social and service-related aspects, although much of the cleft literature is focused on the early stages of children's lives. However, the quality of cleft research to date about parents' experiences has also been variable, with a narrow emphasis on cross-sectional, deficit-orientated psychological approaches focused mainly on mothers. Despite a substantial literature, little qualitative research has examined parents' perspectives in-depth, particularly about their child's treatment journey. This contrasts with the wider children's literature, which has traditionally drawn not only on psychological approaches but also on the broader perspectives of sociology, social policy, nursing and health services research, using both qualitative and quantitative methods, often in integrated ways. Such approaches have been able to highlight a greater range of experiences from both mothers and fathers, about caring for a child with a long-term condition and views about treatment. The review identifies a lack of comparable research in the cleft field to examine parents' experiences and needs at different stages of their children's lives. Above all, research is needed to investigate how both mothers and fathers might experience the long-term and complex treatment journey as children become older and to elicit their views about decision making for cleft treatments, particularly elective surgeries.     

‘It struck at the heart of who I thought I was’: A meta‐synthesis of the qualitative literature examining the experiences of people with multiple sclerosis

BackgroundPeople with multiple sclerosis (MS) have varied experiences and approaches to self‐management. This review aimed to explore the experiences of people with MS, and consider the implications of these experiences for clinical practice and research.MethodsA meta‐synthesis of the qualitative literature examining experiences of people with MS was conducted using systematic searches of ProQuest, PubMed, CINAHL and PsycINFO. We incorporated feedback from team members with MS as expert patient knowledge‐users to capture the complex subjectivities of persons with lived experience responding to research on lived experience of the same disease.ResultsOf 1680 unique articles, 77 met the inclusion criteria. We identified five experiential themes: (a) the quest for knowledge, expertise and understanding, (b) uncertain trajectories (c) loss of valued roles and activities, and the threat of a changing identity, (d) managing fatigue and its impacts on life and relationships, and (f) adapting to life with MS. These themes were distributed across three domains related to disease (symptoms; diagnosis; progression and relapse) and two contexts (the health‐care sector; and work, social and family life).ConclusionThe majority of people in the studies included in this review expressed a determination to adapt to MS, indicating a strong motivation for people with MS and clinicians to collaborate in the quest for knowledge. Clinicians caring for people with MS need to consider the experiential and social outcomes of this disease such as fatigue and the preservation of valued social roles, and incorporate this into case management and clinical planning.     

Understanding the health impact of caregiving: a qualitative study of immigrant parents and single parents of children with cancer

Purpose

Research looking at the health of parents of children with cancer typically uses outcome measures focused on symptoms of anxiety, depression, or post-traumatic stress. Our team builds on this literature to provide a more comprehensive understanding of the health impact of caregiving.

Methods

Interviews were conducted with 79 Canadian parents of children with cancer at least 6?months post-diagnosis. Line-by-line coding was used to establish categories and themes. Constant comparison was used to examine relationships within and across codes and categories. Interviewing continued until no new themes emerged.

Results

Parents described health concerns as including sleep disturbance, daytime fatigue, anxiety, depression, social isolation, and changes in social roles. Parents described the positive impacts of caregiving as including gaining a greater appreciation for child and family and developing compassion, empathy, patience, inner strength, and new perspectives on life.

Conclusion

Parents of children with cancer can experience a range of health problems due to the emotional impact of a cancer diagnosis and the intensive and often prolonged nature of treatment and aftercare. Given the central role parents play as caregivers, it is crucial to understand the health impact of caregiving so that supportive interventions can be implemented as necessary.     

Impacts of COPD on family carers and supportive interventions: a narrative review

Caring for a relative with chronic disease influences multiple dimensions of family carers’ lives. This study aimed to provide an overview of the impacts of chronic obstructive pulmonary disease (COPD) on family carers and identify interventions aimed at supporting them. A narrative review was conducted. Searches were performed in electronic databases using a combination of keywords. Articles were screened for relevance and selected articles were analysed in two groups considering the study aims. Eighteen articles were selected. Fifteen studies evaluated the impacts of COPD on family carers and three studies presented interventions aimed at supporting them. Carers reported negative impacts of caring on physical health, emotional, social, relational and financial/employment life dimensions. Positive aspects of care‐giving were reported in four studies and were related to carers’ personal growth and satisfaction in being able to do something useful for their relatives. The existing interventions were directed at both patients and carers; however, studies provided limited information on how carers were involved, hindering the interpretation of findings. In conclusion, COPD poses several unique challenges to family carers related to the specificities of the disease. Further research with appropriate intervention studies is needed to promote carers’ healthy adjustment to the disease.     

'Falling out of culture': the effects of repetition strain injury on sufferers' roles and identity

Abstract Repetition Strain Injury (RSI), a non-specific and controversial constellation of work-related hand, arm and neck symptoms, became endemic in Australian industry in the early 1980s. Fifty two women who worked in a telecommunications organisation and chicken processing factory and had been diagnosed as having Repetition Strain Injury were interviewed about their perceptions and experiences of the illness. Their accounts of the effects of the pain and limitation on their work, home lives and identity reveal pervasive and ramifying consequences, including unemployment, a reduced capacity to do housework, disruption to family relationships and plans for the future, financial hardship, emotional and mental distress, loss of sleep, and an erosion of self-esteem and involvement in leisure activities. Dominant themes in the interviews are the ambiguity of the illness and uncertainty about the prognosis, the disbelief of others which marginalises sufferers and contributes to a sense of loss of 'self and integrity, and the emotive political climate in which the women are forced to renegotiate roles and adapt to the limitations which RSI places on their lives.     

Quality of life in tuberculosis: A review of the English language literature

Introduction: Tuberculosis (TB) studies have concentrated on clinical outcomes; few studies have examined the impact of TB on patients' quality of life (QOL). Methods: A systematic review of published medical literature using specific MESH terms: [Tuberculosis] and 1 – [Outcome], 2 – [Outcome Assessment], 3 – [Quality of Life], 4 – [Mood Disorder], 5 – [Cost and Cost Analysis], 6 – [Religion], 7 – [Perception], 8 – [Social Support], 9 – [Optimism], 10 – [Stress], 11 – [Signs and Symptoms], and 12 – [Cost of Illness]. This yielded 1972 articles; 60 articles met inclusion criteria and were reviewed. Results: TB somatic symptoms have been well studied, but there were no studies of effects on physical functioning or general health perceptions. Patients tend to be worried, frustrated, or disappointed by their diagnosis, but it is unknown how emotional health changes with treatment. Diagnosed patients are less likely to find work, and less able to work and care for their families. TB creates the greatest financial burden on the poor. In developing countries, patients and their families are ostracized by society, and families sometimes ostracize patients; the extent of TB's social stigma in the developed countries is unknown. Conclusion: There has been relatively little research on TB QOL and even less in developed countries. A better understanding may help improve treatment regimens, adherence to treatment, and functioning and well-being of people with TB.     

Barriers to Cancer Care,Perceived Social Support,and Patient Navigation Services for Korean Breast Cancer Patients

The present study aimed to examine the relationships among barriers to cancer care, perceived social support, and patient navigation services (PNS) for Korean breast cancer patients. For Korean breast cancer patients, PNS are comprised of five services, including emotional, financial, information, transportation, and disease management. The study findings demonstrated that transportation and disease management barriers were directly associated with PNS, whereas emotional and financial barriers were indirectly associated with PNS through perceived social support. The current study provides a preliminary Korean patient navigation model to identify how barriers to cancer care can be reduced through social support and PNS.     

Ethical,legal and social implications of human genome studies in radiation research: a workshop report for studies on atomic bomb survivors at the Radiation Effects Research Foundation

The Radiation Effects Research Foundation (RERF) is the primary organization in Japan dedicated to studying the health consequences of the Hiroshima and Nagasaki atomic bombings in World War II. In December 2020, RERF held a virtual international workshop on the ethical, legal and social implications (ELSI) of genome studies. In this workshop, the ELSI considerations of future human genome studies on radiation research including atomic bomb survivors and their families were discussed. Since genome sequencing (GS) is now practical and affordable, RERF now plans GS of parents/child trios to examine genetic effects of atomic bomb radiation. As such studies may engender some novel risks and benefits, ethics review and engagement with families (including consent) need to be considered. These include protection of individual privacy, use of samples from deceased prior participants, return of results to the participants, public sharing of genome data and advance science and social welfare. Specifically with regard to social welfare, the results of such studies may have implications for public and government decision-making regarding social benefits of victims and other important questions. Based on these broad-ranging discussions we have developed the following concepts to guide this work: “trust,” “compromise” and “relationship building,” inclusive of the concerned stakeholders, scientific aims and Japanese society at large. We conclude that in order to realize, establish and maintain these concepts, it is essential to put procedures into place to ensure the successful, consensus-based implementation of the RERF studies.     

Daily geographies of caregivers: mobility,routine, scale

The bulk of care provided to elderly people living in the community and needing assistance is provided informally by family and friends. This paper investigates themes from an interpretation of interviews with informal caregivers about their experiences of caring for a frail, ill, or disabled elderly person at home. These themes include mobility, routine, and inter-relationships of scale. The caregivers' narratives illustrate the interconnected nature of physical, material and social, emotional aspects of care, and the profound spatial and social impact of providing informal care to a family member on their everyday lives. These are often at odds with political and social constructions of what it means to care at home. Concepts of space, place, and time are shown to be a helpful framework through which to understand issues and experiences of caring. The social and the physical aspects of the many interconnected scales and places which caregivers negotiate on an everyday basis both shape and are shaped by caregiving.     

Spiritual feasts: meaningful conversations between hospice volunteers and patients

Conversations between hospice volunteers and patients provide patients with emotional and social support, and they are meaningful and satisfying to volunteers. Through questionnaires and interviews, hospice volunteers were asked to describe a meaningful conversation with a patient. Many volunteers stated that all conversations were meaningful. Most, however, were able to describe one specific conversation, though they noted that meaningful conversations cannot be forced and often arise after many interactions. Prominent themes were the meaning of life, experiences and life stories, talk about death and spirituality, discussions of families and relationships, and shared interests. Volunteers expressed appreciation for the opportunity to learn about patients' lives and to gain life lessons. They also indicated the need to listen and respond without judgment.     

Needs in rare diseases during paediatric age

All rare diseases present a common set of challenges to the sufferers and their families: diagnosis, dealing with symptoms, health information, obtaining helpful medical care, availability of medications, disability and emotional impact. Children with rare disorders are an important population from health care services, and social services perspectives, and families are providing long-term care for these chronically ill children. The impact of rare disorders in children is far-reaching, extending beyond the child to all those with whom he/she has contact. Multiple facets of life are affected including social an family relationships, economical well-being and activities of daily living. The assessment of needs for rare disorders treatment is a critical step in providing high quality care and achieving patients' and families' satisfaction. Findings from different studies show that people with rare diseases have medical and social needs. Social needs are becoming more relevant in developed countries where health care services, even with limitations, have greater availability than social services. Furthermore, it seems that health care and social services for persons with rare diseases need to be improved to address the patients' needs and to provide better support to families. Validated tools with good psychometric properties are still needed to assess quality of care on the basis of patients and family needs.