Search results for: caregiver

Authors: M. Petunia Tsweleng

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Statement of the Problem: Research and aid organisations report that children and adolescents orphaned due to HIV and AIDS are particularly vulnerable as they are often exposed to negative effects of both HIV and AIDS and orphanhood. Without much-needed parental love, care, and support, these children and adolescents are at risk of poor developmental outcomes. A cursory look at the available literature on AIDS-orphaned adolescents, and the quality of caregiving relationships with caregivers, shows that this is a relatively under-researched terrain. This article is a review of the literature on caregiving relationships of adolescents orphaned due to AIDS and their current primary caregivers. It aims to inform community programmes and policymakers by providing insight into the qualities of these relationships. Methodology: A comprehensive search of both peer-reviewed and non-peer-reviewed literature was conducted through EBSCOhost, SpringLINK, PsycINFO, SAGE, PubMed, Elsevier ScienceDirect, JSTOR, Wiley Online Library databases, and Google Scholar. The combination of keywords used for the search were: (caregiving relationships); (orphans OR AIDS orphaned children OR AIDS orphaned adolescents); (primary caregivers); and (quality caregiving); (orphans); (HIV and AIDS). The search took place between 24 January and 28 February 2022. Both qualitative and quantitative research studies published between 2010 and 2020 were reviewed. However, only qualitative studies were selected in the end -as they presented more profound findings concerning orphan-caregiver relationships. The following three stages of meta-synthesis analysis were used to analyse data: refutational syntheses, reciprocal syntheses, and line of argument. Results: The search resulted in a total of 2090 titles, of which 750 were duplicates and therefore subtracted. The researcher reviewed all the titles and abstracts of the remaining 1340 articles. 329 articles were identified as relevant, and full texts were reviewed. Following the review of the full texts, 313 studies were excluded for relevance and 4 for methodology. Twelve articles representing 11 studies fulfilled the inclusion criteria and were selected. These studies, representing different countries across the globe, reported similar forms of hardships experienced by caregivers economically, psychosocially, and healthwise. However, the studies also show that the majority of caregivers found contentment in caring for orphans, particularly grandmother carers, and were thus enabled to provide love, care, and support despite hardships. This resulted in positive caregiving relationships -as orphans fared well emotionally and psychosocially. Some relationships, however, were found negative due to unhealed emotional wounds suffered by both caregivers and orphans and others due to the caregiver’s lack of interest in providing care. These findings were based on self-report data from both orphans and caregivers. Conclusion: Findings suggest that intervention efforts need to be intensified to: alleviate poverty in households that are affected by HIV and AIDS pandemic, strengthen the community psychosocial support programmes for orphans and their caregivers; and integrate clinical services with community programmes for the healing of emotional and psychological wounds. Contributions: Findings inform community programmes and policymakers by providing insight into the qualities of the mentioned relationships as well as identifying factors commonly associated with high-quality caregiving and poor-quality caregiving.

Keywords: systematic review, caregiving relationships, orphans and primary caregivers, AIDS

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Authors: Gabriella Zarlenga, Martha L. Hall

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Introduction: Premature infants are at risk for neurodevelopmental deficits and hospital readmissions, which can increase the financial burden on the health care system and families. Kangaroo care (skin-to-skin contact) is a practice that can improve preterm infant health outcomes. Preterm infants can acquire adequate body temperature, heartbeat, and breathing regulation through lying directly on the mother’s abdomen and in between her breasts. Due to some infant’s condition, kangaroo care is not a feasible intervention. The purpose of this proof-of-concept research project is to create a device which simulates skin-to-skin contact for pre-term infants not eligible for kangaroo care, with the aim of promoting baby’s health outcomes, reducing the incidence of serious neonatal and early childhood illnesses, and/or improving cognitive, social and emotional aspects of development. Methods: The study design is a proof-of-concept based on a three-phase approach; (1) observational study and data analysis of the standard of care for 2 groups of pre-term infants, (2) design and concept development of a novel device for pre-term infants not currently eligible for standard kangaroo care, and (3) prototyping, laboratory testing, and evaluation of the novel device in comparison to current assessment parameters of kangaroo care. A single center study will be conducted in an area hospital offering Level III neonatal intensive care. Eligible participants include newborns born premature (28-30 weeks of age) admitted to the NICU. The study design includes 2 groups: a control group receiving standard kangaroo care and an experimental group not eligible for kangaroo care. Based on behavioral analysis of observational video data collected in the NICU, the device will be created to simulate mother’s body using electrical components in a thermoplastic polymer housing covered in silicone. It will be designed with a microprocessor that controls simulated respiration, heartbeat, and body temperature of the 'simulated caregiver' by using a pneumatic lung, vibration sensors (heartbeat), pressure sensors (weight/position), and resistive film to measure temperature. A slight contour of the simulator surface may be integrated to help position the infant correctly. Control and monitoring of the skin-to-skin contact simulator would be performed locally by an integrated touchscreen. The unit would have built-in Wi-Fi connectivity as well as an optional Bluetooth connection in which the respiration and heart rate could be synced with a parent or caregiver. A camera would be integrated, allowing a video stream of the infant in the simulator to be streamed to a monitoring location. Findings: Expected outcomes are stabilization of respiratory and cardiac rates, thermoregulation of those infants not eligible for skin to skin contact with their mothers, and real time mother Bluetooth to the device to mimic the experience in the womb. Results of this study will benefit clinical practice by creating a new standard of care for premature neonates in the NICU that are deprived of skin to skin contact due to various health restrictions.

Keywords: kangaroo care, wearable technology, pre-term infants, medical design

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Authors: Taylor Brown

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The parent-child attachment bond begins early, often before the birth of the child. Both father and mother begin to form a bond with their child by selecting a name, preparing for the birth, etc. The biological mother carries the child and often breastfeeds the infant after birth. While fathers play an important role in caring for the child as well, the mother is traditionally seen as the caregiver with the primary role of caring for her baby. These core ideas could include how to form bonds, how to communicate emotions, and even how to create and maintain relationships. Mothers tend to shape their children’s minds based on their own. Studies have even shown that when mothers stroke their children’s bodies with their fingers, the child does calm down more than most other methods. The bond between mother and child is one that happens immediately and strengthens over time. This attachment affects the child’s overall development. The mother-child attachment style is directly linked to a multitude of patterns in adolescents, and later on, adults. The researcher believes that the subsequent patterns of communication in romantic relationships are included in the multitude. Awareness of these patterns and their effects could improve experiences in romantic relationships during young adulthood.

Keywords: emotion regulation, parenting, maternal, attachment, romantic

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Authors: Yoko Yamada, Chizumi Yamada

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Narrative psychology is based on the dialogical relationship between self and other. The dialogue can consist of divided, competitive, or opposite communication between self and other. We constructed models of coexistent dialogue in which self and other were positioned side by side and communicated sympathetically. We propose new mediation models for narrative relationships. The mediation models are based on triadic relationships that incorporate a medium or a mediator along with self and other. We constructed three types of mediation model. In the first type, called the “Joint Attention Model”, self and other are positioned side by side and share attention with the medium. In the second type, the “Triangle Model”, an agent mediates between self and other. In the third type, the “Caring Model”, a caregiver stands beside the communication between self and other. We apply the three models to the illness narratives of medical professionals and patients. As these groups have different views and experiences of disease or illness, triadic mediation facilitates the ability to see things from the other person’s perspective and to bridge differences in people’s experiences and feelings. These models would be useful for medical education in various situations, such as in considering the relationships between senior and junior doctors and between old and young patients.

Keywords: illness narrative, mediation, psychology, model, medical education

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Authors: Caroline Seo, Jennifer Stephens, Kirstin H. Heinrich

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Background: Clostridiodes (formerly Clostridium) difficile infection (CDI) is an anaerobic, spore-forming bacterium with manifestations including diarrhea, pseudomembranous colitis and toxic megacolon. Despite general understanding that CDI may be associated with marked burden on patients’ health, there has been limited information available on the humanistic burden of CDI. The objective of this literature review was to summarize the published data on the humanistic burden of CDI globally, in order to better inform future research efforts and increase awareness of the patient perspective in this disease. Methods: A comprehensive literature review of the past 15 years (2002-2017) was conducted using MEDLINE, Embase and Cumulative Index of Nursing and Allied Health Literature. Additional searches were conducted from conference proceedings (2015-2017). Articles selected were studies specifically designed to examine the humanistic burden of illness associated with adult patients with CDI. Results: Of 3,325 articles or abstracts identified, 33 remained after screening and full text review. Sixty percent (60%) were published in 2016 or 2017. Data from the United States or Western Europe were most common. Data from Brazil, Canada, China and Spain also exist. Thirteen (13) studies used validated patient-reported outcomes instruments, mostly EQ-5D utility and SF-36 generic instruments. Three (3) studies used CDI-specific instruments (CDiff32, CDI-DaySyms). The burden of CDI impacts patients in multiple health-related quality of life (HRQOL) domains. SF-36 domains with the largest decrements compared to other GI diarrheal diseases (IBS-D and Crohn’s) were role physical, physical functioning, vitality, social functioning, and role emotional. Reported EQ-5D utilities for CDI ranged from 0.35-0.42 compared to 0.65 in Crohn’s and 0.72 in IBS-D. The majority of papers addressed physical functioning and mental health domains (67% for both). Across various studies patients reported weakness, lack of appetite, sleep disturbance, functional dependence, and decreased activities of daily lives due to the continuous diarrhea. Due to lack of control over this infection, CDI also impacts the psychological and emotional quality of life of the patients. Patients reported feelings of fear, anxiety, frustration, depression, and embarrassment. Additionally, the type of disease (primary vs. recurrent) may impact mental health. One study indicated that there is a decrement in SF-36 mental scores in patients with recurrent CDI, in comparison to patients with primary CDI. Other domains highlighted by these studies include pain (27%), social isolation (27%), vitality and fatigue (24%), self-care (9%), and caregiver burden (0%). Two studies addressed work productivity, with 1 of these studies reporting that CDI patients had the highest work productivity and activity impairment scores among the gastrointestinal diseases. No study specifically included caregiver self-report. However, 3 studies did provide mention of patients’ worry on how their diagnosis of CDI would impact family, caregivers, and/or friends. Conclusions: Despite being a serious public health issue there has been a paucity of research on the HRQOL among those with CDI. While progress is being made, gaps exist in understanding the burden on patients, caregivers, and families. Future research is warranted to aid understanding of the CDI patient perspective.

Keywords: burden, Clostridiodes, difficile, humanistic, infection

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Authors: Erin C. Rodenburg, Jennifer McWhirter, Andrew Papadopoulos

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Support workers for adults with developmental disabilities promote the care and wellbeing of a historically underserved population. Poor employment training and low work satisfaction for these disability support workers are linked to low productivity, poor quality of care, turnover, and intention to leave employment. Therefore, to improve the lives of those within disability support homes, both client and caregiver, it is vital to determine where improvements to training and support for those providing direct care can be made. The current study aims to explore disability support worker’s perceptions of the training received in their employment at the residential homes, how it prepared them for their role, and where there is room for improvement with the aim of developing recommendations for an improved training experience. Responses were collected from 85 disability support workers across 40 Ontario group homes. Findings suggest most disability support workers within the 40 support homes feel adequately trained in their responsibilities of employment. For those who did not feel adequately trained, the main issues expressed were a lack of standardization in training, a need for more continuous training, and a move away from trial and error in performing tasks to support clients with developmental disabilities.

Keywords: developmental disabilities, disability workers, support homes, training

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Authors: Donatien Callon, Ian Lalonde, Mathieu Nadeau, Alexandre Girard

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Patient transfer is a challenging, critical task because it exposes caregivers to injury risks. Available transfer devices, like floor lifts, lead to improvements but are far from perfect. They do not eliminate the caregivers’ risk of musculoskeletal disorders, and they can be burdensome to use due to their poor maneuverability. This paper presents a new motorized floor lift with a single central motorized wheel connected to an instrumented handle. Admittance controllers are designed to 1) improve the device maneuverability, 2) reduce the required caregiver effort, and 3) ensure the security and comfort of patients. Two controller designs, one with a linear admittance law and a non-linear admittance law with variable damping, were developed and implemented on a prototype. Tests were performed on seven participants to evaluate the performance of the assistance system and the controllers. The experimental results show that 1) the motorized assistance with the variable damping controller improves maneuverability by 28%, 2) reduces the amount of effort required to push the lift by 66%, and 3) provides the same level of patient comfort compared to a standard unassisted floor lift.

Keywords: floor lift, human robot interaction, admittance controller, variable admittance

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Authors: Raju Singh, Shikha Singh

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This article is note for managing Autistic Child during the Corona time line. It becomes very critical for the primary caregiver as corona pandemic poses new challenges and completely variety of threats to line of treatment, growth, socialization, mental health for children with autism spectrum disorder (ASD), and, so for the family of the children. It is a highly distressful situation, where the line of treatment has shrunken, physical contact has reduced and therapies footprints reduced in several parts of the world. As children with ASD already face socialization challenges, isolation rules imposed by individuals (or social groups), government agencies have only made the situation worse for the children with ASD and their family. This note will try to touch the basics on understanding the ASD and related development disorders, challenges, impact, and suggest approaches to deal with such situation. This document also covers data analysis, deep dive into the increasing impact of ASD on children. This document can also act as a baseline for many researchers, psychiatrists, psychologists, therapists to view the problem statement and measure its impact.

Keywords: autism spectrum disorder, mental health, applied behavior therapy, occupational therapy, social anxiety

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Authors: Ekhlas Al Gamal, Tony Long

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The impact on the parents of caring for a child with cancer was intense and wide-ranging. A high level of distress and low level or resilience remains during treatment. Even completion of treatment can be a time of increased anxiety and stress for parents particularly with worries about recurrence or relapse. The purpose of this study to examine the associations between parental satisfactions with healthcare provided for their child and the impact of being a caregiver for a child with cancer. Methodology: A descriptive, correlational and cross-sectional design was employed using data from Arabic versions of self-report questionnaires which were administered to 113 parents with children with cancer in Jordan during 2015. Findings: the result indicated that Family relationship functioning was ranked as the highest (better functioning) domain while daily activities were ranked as the lowest (poorer functioning) domain. Parents were generally satisfied with the health care provided, but their emotional needs were not met adequately. Parents with better social functioning were more satisfied in all areas of healthcare satisfaction other than emotional needs and communication. Parents who had a child with more emotional and behavioural problems were more likely to experience a negative impact on the family and a poor level of family functioning. Conclusion and Significance: Nurses and other health care providers should emphasis on family centred approach rather than child centred approach.

Keywords: parents, children, cancer, Jordan

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Authors: Justine McKay

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Implicit Bias and its impact on the schooling experience of racial minorities with ADHD is significant. ADHD has become a globally diagnosed disorder. The lack of an objective diagnostic tool for ADHD has created controversy over the disease and its validity. ADHD is referred to as a social construct or a suburban problem related to active white boys who disrupt classrooms. The subjectivity of an ADHD diagnosis and the diagnostic process is based on norm-referenced checklists of behaviours completed by the student, caregiver, teachers, clinicians, and other community members. Teachers' perceptions of classroom behaviours are influenced by implicit bias related to race and socioeconomic status. The same behaviours displayed by white and marginalized or low-income students are perceived differently. The white student is perceived to be struggling academically and needing support, while the marginalized or lower-income student's behaviour is seen as disruptive or criminal. The presence of teacher implicit bias results in the inequity of diagnosis, and academic support, which has long-term implications for these students. The subjectivity of the diagnostic process socially reproduces the systemic injustice of opportunity for marginalized youth within the education system.

Keywords: ADHD, education, equity, implicit bias, subjectivity

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Authors: Budsarin Padwang, Darunee Jongudomkarn, Thawan Nieamsup, Autchareeya Patumwan, Rutja Phuphaibul

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In Northern Thailand, a pilot study by the qualitative data, on caring for family members with chronic illness/bedridden based on in-depth interviews of the 12 elderly caregivers in family was carried out during November to December 2017. There are four families that living with three generations in the family. This report is part of a larger study of 'The intergenerational contract of the family in long-term care for older members' to understand the situation and context related to the research questions. Content analysis was obtained and the results revealed as followings. 1) No choice and no freedom: most caregivers were asked by their family members to do the care giving roles because of various appropriate reasons and they could not refuse and felt like having no freedom. 2) ‘Katanyu’ to the parents: The Thai ideology of making merit by taking care of parents was beliefs to do the best in their caregiver roles. 3) The family commitments: The issues of family caring and relationships were the key value of keeping family members to take care of older members with chronic illness/bedridden. The preliminary findings can be beneficial for other regions and will lead to in-depth explore to answer the research questions of the larger study in the future.

Keywords: intergenerational contract, long term care, older members, generational family

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Authors: Ramazan Bakir, Gizem Kayar

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It is known that Alzheimer and Dementia are the two most common types of Neurodegenerative diseases and their visibility is getting accelerated for the last couple of years. As the population sees older ages all over the world, researchers expect to see the rate of this acceleration much higher. However, unfortunately, there is no known pharmacological cure for both, although some help to reduce the rate of cognitive decline speed. This is why we encounter with non-pharmacological treatment and tracking methods more for the last five years. Many researchers, including well-known associations and hospitals, lean towards using non-pharmacological methods to support cognitive function and improve the patient’s life quality. As the dementia symptoms related to mind, learning, memory, speaking, problem-solving, social abilities and daily activities gradually worsen over the years, many researchers know that cognitive support should start from the very beginning of the symptoms in order to slow down the decline. At this point, life of a patient and caregiver can be improved with some daily activities and applications. These activities include but not limited to basic word puzzles, daily cleaning activities, taking notes. Later, these activities and their results should be observed carefully and it is only possible during patient/caregiver and M.D. in-person meetings in hospitals. These meetings can be quite time-consuming, exhausting and financially ineffective for hospitals, medical doctors, caregivers and especially for patients. On the other hand, digital support systems are showing positive results for all stakeholders of healthcare systems. This can be observed in countries that started Telemedicine systems. The biggest potential of our system is setting the inter-user communication up in the best possible way. In our project, we propose Machine Learning based digitalization of validated traditional cognitive tests (e.g. MOCA, Afazi, left-right hemisphere), their analyses for high-quality follow-up and communication systems for all stakeholders. R. Bakir and G. Kayar are with Gefeasoft, Inc, R&D – Software Development and Health Technologies company. Emails: ramazan, gizem @ gefeasoft.com This platform has a high potential not only for patient tracking but also for making all stakeholders feel safe through all stages. As the registered hospitals assign corresponding medical doctors to the system, these MDs are able to register their own patients and assign special tasks for each patient. With our integrated machine learning support, MDs are able to track the failure and success rates of each patient and also see general averages among similarly progressed patients. In addition, our platform also supports multi-player technology which helps patients play with their caregivers so that they feel much safer at any point they are uncomfortable. By also gamifying the daily household activities, the patients will be able to repeat their social tasks and we will provide non-pharmacological reminiscence therapy (RT – life review therapy). All collected data will be mined by our data scientists and analyzed meaningfully. In addition, we will also add gamification modules for caregivers based on Naomi Feil’s Validation Therapy. Both are behaving positively to the patient and keeping yourself mentally healthy is important for caregivers. We aim to provide a therapy system based on gamification for them, too. When this project accomplishes all the above-written tasks, patients will have the chance to do many tasks at home remotely and MDs will be able to follow them up very effectively. We propose a complete platform and the whole project is both time and cost-effective for supporting all stakeholders.

Keywords: alzheimer’s, dementia, cognitive functionality, cognitive tests, serious games, machine learning, artificial intelligence, digitalization, non-pharmacological, data analysis, telemedicine, e-health, health-tech, gamification

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Authors: Su-Lin Yu

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This paper will explore how gender and care discourse are intersected, reformulated and contested in American daughters’ caregiving memoirs. In particular, it will attempt to show how gender structure has worked to regulate a daughter’s response to her mother’s illness. In other words, how do certain cultural notions and class difference affect the ways in which the daughter enacts her caregiving response to her mother’s illness? What is the interrelation of female subjectivity and care practice? To understand care and gender politics in the memoirs, this paper will engage in close readings of five texts: Sandra Bullock Simith’s Trading Places: Becoming My Mother’s Mother: A Daughter’s Memoir (2015),Martha Stettinius’s Inside the Dementia Epidemic: A Daughter’s Memoir (2012), Patricia Thompson Collamer’s Grace on the Ledge: a Caregiver's Memoir, Judith Henry’s The Dutiful Daughter's Guide to Caregiving: A Practical Memoir (2015), and The Daughter's Dilemma: A Survival Guide to Caring for an Aging, Abusive Parent by Emily Wanderer Cohen (2018). By analyzing these texts, this paper will show why adult daughters become the primary caregivers, how gender norms and care practices influence a daughter’s thoughts and actions, and how it affects her self-understanding. Taken as a whole, then, the paper will provide an important examination not only of care and gender politics, but also a contribution to the intersecting discourses of illness, death, and mother-daughter relationship.

Keywords: care ethics, daughter-mother relationship, gender politics, memoirs

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Authors: Longtao He, Han Wu

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Summary: As the need for elder care increases in China due to a growing aging population and, in particular, rising cancer rates, it becomes increasingly important to also support family caregivers, who are often the main source of care. We used a qualitative meta-synthesis to systematically evaluate and integrate the caregiving experiences of family caregivers of elderly cancer patients as revealed by articles published in Chinese journals. Findings: Nine studies are included in the final analysis. The caregiver experiences they describe are synthesized into three primary themes: care needs, care burden, and care gains, with numerous secondary themes. Besides the findings that seem to align with other findings across cultures, we have highlighted three main discoveries from the synthesis that may be quite specific to the Chinese context: 1. more sub-themes related to specific caregiving skills caregivers of cancer patients; 2. a call for health professionals to improve their communication skills with family caregivers; 3. the important role of filial piety. Applications: Our findings can be used to help health social workers and relevant policymakers in China support family caregivers by identifying the education and training required for caregivers, ways to make the most of potential care gains, and ways to ease care burdens.

Keywords: cancer, Chinese family caregivers, caregiving skills, care burden, care gains, health social work

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Authors: Cecilia Fagerstrom, Solve Elmstahl, Lena S. Wranker

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The conditions of increased morbidity in an aging population cause the need for family care to become more common at an advanced age. The role of family caregivers may well last for a long time but may also change over time, from being caregivers to being non-caregivers or vice versa. Although demands associated with family caring change as individuals enter into, engage with, and exit from this role, the evidence regarding the impact of family caregiving transitions on the health of older carers is still limited. This study comprised individuals (n=2294, 60+years) from the southern part of Sweden included in the project Swedish National study of Aging and Care. Caregiving transitions are discussed in the categories: enter, exit, and continuing during a six-year period. Individuals who exited caregiving during the time were older than those who continued or entered into the role of caregiving. At the six-year follow-up, caregivers who were continuing or had exited caregiving were more often worried about their own health compared to baseline. Resembling findings were not found in those who entered caregiving. Family caregiving transitions of exiting, entering or continuing had no effect on the individuals’ functional, physical and mental health expect for participants who entered in caregiving. For them, entering the role of family caregiving was associated with an improvement in physical health during the six years follow up period. Conclusion: Although the health impact of different caregiving transitions in late life does not differ, individual conditions and health at baseline are important parameters to take into consideration to improve long-term health in family caregivers.

Keywords: family caregiving, health, old age, transition

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Authors: Chao Fang

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Due to the Confucian emphasis on filial piety and an undeveloped social welfare system in mainland China, adult children are both socially and legally obliged to care for their parents, including financial assistance and physical care as well as emotional and social support. Thus a family-centred care pattern for elderly people has been firmly established in China. However, because of the nationwide ‘One Child Policy’, over one million parents are excluded from such care because of the death of their only child and, therefore, their primary caregiver. Without their child’s support, these parents must manage the day to day challenges of growing old alone, with little support from society. By overturning established expectations of a ‘good’ elderly life, the loss of an only child may be accompanied by social and self-stigmatization, pushing these bereaved parents to the margin of society and threatening their economic, physical, emotional and social well-being. More importantly, since the One Child Policy was implemented from the late 1970s and early 1980s, the first generation of bereaved or ‘Shidu’ parents has reached an age at which those parents need elderly care. However, their predicament has been largely ignored. This paper reports on a qualitative interview study that found elderly care to be the main concern for Shidu parents’ everyday life. The paper identifies and discusses the concerns these bereaved parents raised about the prospect of having nowhere to turn at a time of increased need for financial, physical, social and emotional support in old age. The paper also identifies how Shidu parents have been coming together in grief and negotiate to make their predicament known to the government and wider society and to re-define their elderly life by rebuilding a sense of ‘family’.

Keywords: culture, bereavement, China, elderly care

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Authors: Morgan Dempsey, Sam Lewis, Maggie Pierce, Alex Goodman

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This research investigates the impact of equine-assisted therapy programs on occupational engagement for children with intellectual and developmental disabilities. There is a general lack of evidence for equine-based services for this population, so this research aims to decrease gaps in the current literature. To gain comprehensive insight, data will be collected from both the child and their caregiver. This study takes a qualitative approach utilizing online surveys and in-person guided interviews. The participants are individuals ages 4-17 with a diagnosed intellectual or developmental disability who are currently participating in a PATH int. certified equine-assisted therapy program. Also, caregivers of individuals who meet this criterion are included. This study decreases gaps in the literature by providing comprehensive data regarding the impacts of these services on occupational engagement. The addressed domains are physical, behavioral, emotional, and social functioning, as well as overall activity engagement and impacts in everyday life. With a better understanding of how equine-assisted therapy affects relevant outcomes for children with disabilities, an increased number of occupational therapists can implement these uniquely effective services while adhering to standards of evidence-based practice. Ultimately, this research strives to contribute to generalizable data in occupational therapy by supporting the implementation of equine-assisted services for children with intellectual and/or developmental disabilities and their caregivers/families.

Keywords: occupational therapy, pediatric, rehabilitation, hippotherapy

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Authors: Haatembo Mooya

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Cross-culturally, exclusive maternal care of infants is an exception, rather than a rule. In most traditional non-Western societies, child care is shared within the family while in most middle class Western societies parents tend to rely more on ‘hired hands’ for support. In both contexts however, a common caregiver is the sibling. Despite this, the phenomenon of sib-care has remained relatively understudied. Cultural and gender differences in sib-care and attachment were explored using a retrospective survey instrument comparing Zambian and Dutch college students. The total study sample (N = 394) comprised of 200 Zambian students from the University of Zambia and 194 Dutch students from Leiden University, the Netherlands. We tested four main hypotheses. Firstly, we hypothesized that the Zambian subjects performed more sib-care than Dutch subjects. Secondly we hypothesized that female participants performed more sib-care than males participants, both among the Zambian and Dutch subjects, especially when parents are not at home. Thirdly, we hypothesized that larger family size was associated with more sib-care. Finally, we hypothesized that securely attached participants performed more sib-care than their less securely attached peers. Results indicated that sib-care was prevalent in both Zambian and Dutch samples. Zambian subjects performed more sib-care than Dutch subjects, with females performing more sib-care than males, both when parents were at home (F(2, 244) = 62.09, p < .01) and when parents were not at home (F(2, 237) = 51.28, p < .01). We also found that family size and attachment related avoidance and anxiety were not significant predictors of sib-care. It is concluded that sib-care is understudied, not only in Africa but also in Western societies and that females perform more sib-care than males, especially when the parents are not at home. In addition, attachment related avoidance and anxiety appear to be more related to the quality than the quantity of sib-care provided.

Keywords: sibling, sib-care, attachment, Africa, Zambia, the Netherlands

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Authors: Yeaji Seok, Myung Kyung Lee

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Background: Even if patients survive after a stroke, stroke patients may experience disability in mobility, sensation, cognition, and speech and language. Stroke patients require rehabilitation for functional recovery and daily life for a considerable time. During rehabilitation, the role of caregivers is important. However, the stroke patients’ quality of life may deteriorate due to family caregivers’ non-preparedness and increased role burden. Purpose: To investigate the prediction of caregivers' preparedness and role burden on stroke patients’ quality of life. Methods: The target population was stroke patients who were hospitalized for rehabilitation and their family care providers. A total of 153 patient-family caregiver dyads were recruited from June to August 2021. Data were collected from self-reported questionnaires and analyzed using descriptive statistics, t-tests, chi-squared test, one-way analysis of variance, Pearson’s correlation coefficients, and multiple regression with SPSS statistics 28 programs. Results: Family caregivers’ preparedness affected stroke patients’ mobility (β = .20, p < 0.05) and character (β = -.084, p < 0.05) and production activities (β = -.197, p < 0.05) in quality of life. The role burden of family caregivers affected language skills (β = .310, p<0.05), visual functions (β=-.357, p < 0.05), thinking skills (β = 0.443, p = 0.05), mood conditions (β = 0.565, p < 0.001), family roles (β = -0.361, p < 0.001), and social roles (β = -0.304, p < 0.001), while the caregivers’ burden of performing self-protection negatively affected patients’ social roles (β = .180, p=.048). In addition, caregivers’ role burden of personal life sacrifice affected patients’ mobility (β = .311, p < 0.05), self-care (β =.232, p < 0.05) and energy (β = .239, p < 0.05). Conclusion: This study indicated that family caregivers' preparedness and role burden affected stroke patients’ quality of life. The results of this study suggested that intervention to improve family caregivers’ preparedness and to reduce role burden should be required for quality of life in stroke patients.

Keywords: quality of life, preparedness, role burden, caregivers, stroke

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Authors: Mimi My Tse

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The prevalence of chronic non-cancer pain is high among community-dwelling older adults. Pain affects physical and psychosocial abilities. Older adults tend to be less mobile and have a high tendency to fall risk. In addition, older adults with pain are depressed, anxious, and not too willing to join social activities. This will make them feel very lonely and social isolation. Instead of giving pain management education and programs to older adults/clients, both older adults and their caregivers, it is sad to find that the majority of existing services are given to older adults only. Given the importance of family members in increasing compliance with health-promoting programs, we proposed to offer pain management programs to both older adults with his/her caregiver as a “dyad.” We used the Health Promotion Model and implemented a dyadic pain management program (DPM). The DPM is an 8-week group-based program. The DPM comprises 4 weeks of center-based, face-to-face activities and 4 weeks of digital-based activities delivered via a WhatsApp group. There were 30 dyads (15 in the experimental group with DPM and 15 in the control group with pain education pamphlets). Upon the completion of DPM, pain intensity and pain interference were significantly lower in the intervention group as compared to the control group. At the same time, physical function showed significant improvement and lower depression scores in the intervention group. In conclusion, the study highlights the potential benefits of involving caregivers in the management of chronic pain for older adults. This approach should be widely promoted in managing chronic pain situations for community-dwelling older adults and their caregivers.

Keywords: pain, older adults, dyadic approach, education

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Authors: Aikaterini Tavoulari

Abstract:

This research aims to address the types of repetitive behaviours (RBs) observed by adults in children with vision impairment (VI) or autism spectrum disorder (ASD), the explanations the adults employ to interpret these behaviours, and the impact RBs have on the child, the caregiver, the professional and society. The underlying reason for this is an attempt to discover any potential differences between two different disabilities in a comparative fashion. The study is based on the interpretivism paradigm and follows a qualitative approach. A comparative case study design based on the ecological systems theory (EST) is adopted. Thirty-five caregivers and accredited professionals were recruited (17 for the VI group, out of whom 8 were caregivers and 9 were professionals, and 18 for the ASD group, out of whom 9 were caregivers and 9 were professionals). Following the completion of a pilot study, all participants were interviewed regarding one specific child – their own child/student – via semi-structured interviews. During the interviews, the researcher used a research diary as a methodological tool and video elicitation as a facilitation tool. A cross-case analysis was conducted, and data were analysed according to the method of thematic analysis. A link has been indicated between VI and ASD, which concerns perceptions about the socially constructed manner in which an RB is perceived. ASD is perceived by the participants as a disability with challenging characteristics, such as an RB. The ASD group perceived RB as linked to ableism, social stigmatisation, and taboo, in contrast to VI, where the existence of RB seems to be a consequence of sensory loss. Bi-directionality of EST seems to have been lost completely, and the macrosystem seems to drive the interactions between the ecological systems.

Keywords: ableism, social stigma, disability, repetitive behaviour, vision impairment, autism spectrum disorder, perceptions

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Authors: Lina Vyas

Abstract:

Gender gap, unfortunately, is still prevalent in the workplace around the world. In most countries, women are less likely than men to participate in the workplace. They earn considerably less than men for doing the same work and are generally expected to prioritize family obligations over work responsibilities. Women often face more conflicts while balancing the increasingly normalized roles of both worker and mother. True gender equality in the workplace is still a long way off. In Hong Kong, no less is this true. Despite the fact that female students are outnumbered by males at universities, only 55% of women are active participants in the labour market, and for those in the workforce, the gender pay gap is 22%. This structural inequality also exacerbates the issues of confronting biases at work for choosing to be employed as a mother, as well as reinforces the societal expectation of women to be the primary caregiver at home. These pressures are likely to add up for women and contribute to increased levels of work-life conflict, which may be a further barrier for the inclusion of women into the workplace. Family-friendly policies have long been thought to be an alleviator of work-life conflict through helping employees balance the demands in both work and family. Particularly, for women, this could be a facilitator of their integration into the workplace. However, little research has looked at how family-friendly policies may also have a gender differential in effect, as opposed to traditional notions of having universal efficacy. This study investigates both how and how much the gender dimension impacts work-family conflict. In addition to disentangling the reasons for gender gaps existing in work-life conflict for women, this study highlights what can be done at an organizational level to alleviate these conflicts. Most importantly, the policies recommendations derived from this study serve as an avenue for more active participation for women in the workplace and can be considered as a pathway for promoting greater gender egalitarianism and fairness in a traditionally gender-segregated society.

Keywords: family-friendly policies, Hong Kong, work-family conflict, workplace

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Authors: Matthew Heidman, Susan Dallabrida, Analice Costa

Abstract:

For infant caregivers, choosing an infant formula for their child can be a difficult task in an already stressful environment of caring for a newborn. There exist several channels that influence purchasing decision of infant formula such as, friends and family and their experiences, health care professionals, social media influencers, as well as standard media marketing. This study sought to identify the key channels by which caregivers obtain information regarding infant formula and help them make their purchasing decision. A digital survey was issued for 90 days in the US (n=121) and 30 days in Mexico (n=88) targeting respondents with children ≤4 years of age. Respondents were asked two key questions regarding the influences on their purchasing decisions: 1) “When choosing a formula brand, what do you do to help you make your decision?”, and 2) “When choosing a formula brand, what is most important to you?”. A list of potential answers was provided for each question and respondents were asked to select all that apply to them. Lastly, respondents were provided a 5-point Likert scale and asked to respond to the statement 3) “I am more likely to buy a particular formula brand if my pediatrician recommends it to me”. For question 1, in the US and Mexico, 76% and 95% of respondents respectively, selected “I ask my pediatrician” which represented the top selection. For question 2, 52% and 45% of respondents respectively, selected “On package “Pediatrician Recommended” claim…” which also represented the top selection. For statement 3, 82% and 89% of respondents respectively, stated that they either “somewhat agree” or “strongly agree” with the statement. For infant caregivers, the pediatrician is a very important channel of influence when it comes to purchasing decision of infant formula. Caregivers clearly see the pediatrician as the arbiter of their child’s nutrition and seek their recommendations for infant formula use. For infant formula manufacturers, it is important that they see the pediatrician as the gatekeeper to this market, and they put resources into medical marketing communication to this health care professional group to ensure success.

Keywords: infant formula, pediatrician, purchasing driver, caregiver

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Authors: Konrad Rejdak

Abstract:

Introduction: Neurodegenerative diseases are frequently accompanied by loss and unwanted change in functional independence, social relationships, and economic circumstances. Currently, the achievements of social robots to date is being projected to improve multidimensional quality of life among people with cognitive impairment and others. Objectives: Identification of particular human needs in the context of the changes occurring in course of neurodegenerative diseases. Methods: Based on the 110 surveys performed in the Medical University of Lublin from medical staff, patients, and caregivers we made prioritization of the users' needs as high, medium, and low. The issues included in the surveys concerned four aspects: user acceptance, functional requirements, the design of the robotic assistant and preferred types of human-robot interaction. Results: We received completed questionnaires; 50 from medical staff, 30 from caregivers and 30 from potential users. Above 90% of the respondents from each of the three groups, accepted a robotic assistant as a potential caregiver. High priority functional capability of assistive technology was to handle emergencies in a private home-like recognizing life-threatening situations and reminding about medication intake. With reference to the design of the robotic assistant, the majority of the respondent would like to have an anthropomorphic appearance with a positive emotionally expressive face. The most important type of human-robot interaction was a voice-operated system and by touchscreen. Conclusion: The results from our study might contribute to a better understanding of the system and users’ requirements for the development of a service robot intended to support patients with dementia.

Keywords: assistant robot, dementia, long term care, patients

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Authors: Tulika Bhattacharyya, Suhita C. Chatterjee

Abstract:

West Bengal, one of the most rapidly ageing states in India, has inadequate structure for elder care. Therefore, there is an urgent need to improve elder care which involves focusing on different care settings where the elderly exists, like - Homes, Hospitals and Long-Term Care facilities (e.g. - Old Age Homes, Hospices). The study explores various elder care settings, with the intention to develop an understanding about them, and thereby generate comprehensive information about the entire spectrum of elder care in Kolkata. Empirical data are collected from the elderly and their caregivers in different settings. The tools for data collection are narratives, in-depth interviews and focus group discussions, along with field observations. Mixed method design is adopted to analyze the complexities of elder care in different set ups. The major challenges of elder care in private Homes are: architecturally inadequate housing conditions, paucity of financial support and scarcity of skilled caregivers. While the key factors preventing the Hospital and Long-Term Care Facilities from providing elder care services are inadequate policies and set governmental standards for elder care for the hospitalized elderly in various departments of the Hospital and the elderly residing in different kinds of Long Term Care Facilities. The limitations in each care setting results in considerable neglect and abuse of the elderly. The major challenges in elder care in West Bengal are lack of continuum between different care settings/ peripheral location of private Homes within public health framework and inadequate state Palliative policy- including narcotic regulations. The study suggests remedial measures to improve the capacity to deliver elder care in different settings.

Keywords: elder care settings, family caregiver, home care, geriatric hospital care, long term care facility

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Authors: Nannapus Saramad, Rewwadee Petsirasan, Jom Suwanno

Abstract:

Background: This retrospective study design was to describe average blood pressure, blood pressure level, target blood pressure control rate post-stroke BP control in the year following discharge from Sichon hospital, Sichon District, Nakhon Si Thammarat province. The secondary data analysis was employed from the patient’s health records with patient or caregiver interview. A total of 232 eligible post-acute ischemic strokes in the year following discharge (2017-2018) were recruited. Methods: Data analyses were applied to identify the relationship values of single variables were determined through univariate analyses: The Chi-square test, Fisher exact test, the variables found to have a p-value < 0.2 were analyzed by the binary logistic regression Results: Most of the patients in this study were men 61.6%, an average age of 65.4 ± 14.8 years. Systolic blood pressure levels were in the grade 1-2 hypertension and diastolic pressure at optimal and normal at all times during the initial treatment through the present. The results revealed 25% among the groups under the age of 60 achieved BP control; 36.3% for older than 60 years group; and 27.9% for diabetic group. The multivariate analysis revealed the final relationship of four significant variables: 1) receiving calcium-channel blocker (p =.027); 2) medication adherence of antihypertensive (p = .024) 3) medication adherence of antiplatelet ( p = .020); and 4) medication behavior ( p = . 010) . Conclusion: The medical nurse and health care provider should promote their adherence to behavior to improve their blood pressure control.

Keywords: acute ischemic stroke, target blood pressure control, medication adherence, recurrence stroke

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Authors: Renee Fabian, Jordan Davidson

Abstract:

Current research on non-suicidal self-injury (NSSI) provides ample insights on best practices for caregivers and clinicians to address and reduce NSSI behavior among adolescents. However, the efficacy of evidenced-based NSSI interventions and their delivery from the perspective of adolescent patients does not receive significant attention, creating a gap between the efficacy of research-based NSSI interventions and adolescent perceptions of NSSI treatment and adolescent willingness to engage in NSSI interventions. To address the gap between practice and patient perspectives and inform more effective treatment outcomes, the current survey aims to identify major patient-reported adverse reactions to NSSI disclosures from caregivers, treating mental health clinicians, and medical professionals using a mixed methods survey of 2,500 people with a history of NSSI completed by editors at a consumer-facing health publication. Based on the analyzed results of the survey, a majority of adolescents with a history of NSSI found parents and caregivers ineffective at empathetically addressing NSSI, and a significant number of participants reported at least one treating mental health professional inadequately responded to NSSI behaviors, in addition to other findings of adverse reactions to NSSI disclosures that serve as a barrier to treatment. NSSI is a significant risk factor for future suicide attempts. Addressing patient-reported adverse reactions to NSSI disclosures in the adolescent population can remove barriers to the effectiveness of caregiver and clinician NSSI interventions and reduce the risk of NSSI-related harm and lower the risk of future suicide attempts or completions.

Keywords: adolescent self-injury, non-suicidal self-injury, patient perspectives, self-harm interventions

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Authors: Konrad Rejdak, Agnieszka Korchut, Sebastian Szklener, Urszula Skrobas, Justyna Gerlowska, Katarzyna Grabowska-Aleksandrowicz, Dorota Szczesniak-Stanczyk

Abstract:

Introduction: Neurodegenerative diseases are frequently accompanied by loss and unwanted change in functional independence, social relationships, and economic circumstances. Currently, the achievements of social robots to date is being projected to improve multidimensional quality of life among people with cognitive impairment and others. Objectives: Identification of particular human needs in context of the changes occurring in course of neurodegenerative diseases. Methods: Based on the 110 surveys performed in Medical University of Lublin from medical staff, patients, and caregivers we made prioritization of the users' needs as: high, medium, and low. The issues included in the surveys concerned four aspects: user acceptance, functional requirements, design of the robotic assistant and preferred types of human-robot interaction. Results: We received completed questionnaires: 50 from medical staff, 30 from caregivers and 30 from potential users. Above 90% of the respondents from each of the three groups, accepted robotic assistant as a potential caregiver. High priority functional capability of assistive technology was to handle emergencies in a private home like recognizing life-threatening situations and reminding about medication intake. With reference to design of the robotic assistant, the majority of the respondent would like to have an anthropomorphic appearance with positive emotionally expressive face. The most important type of human-robot interaction was voice-operated system and by touchscreen. Conclusion: The results from our study might contribute to a better understanding of the system and users’ requirements for the development of a service robot intended to support patients with dementia.

Keywords: social robot, dementia, requirements, patients needs

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Authors: Danila Zuffetti, Lorenzo Chiesa

Abstract:

Background: A hospice narrative interview aims at putting the sick at the core of disease and treatment allowing them to explore their most intimate facets. The aim of this work is to favor authentic narration by leading towards awareness and acceptance of terminality and to face death with serenity. Narration in palliative care aims at helping to reduce the chaos generated by the disease and to elaborate interpretations on the course of reality, besides, the narration delivered to the doctor is fundamental and communicates the meaning given to symptoms. Methods: The narrative interview has become a regular activity in the Castellini Foundation since 2017. Patients take part every week, and for more days, in one hour sessions, in a welcoming and empathic setting and the interaction with the operator leads to a gradual awareness of their terminality. Patients are submitted with free answer questions with the purpose of facilitating and stimulating self-narration. Narration has not always been linear, but patients are left free to shift in time to revisit their disease process by making use of different tools, such as digital storytelling. Results: The answers provided by the patients show to which extent the narrative interview is an instrument allowing the analysis of the stories and gives the possibility to better understand and deepen the different implications of patient and caregiver’s background. Conclusion: The narration work in the hospice demonstrates that narrative medicine is an added value. This instrument has proven useful not only in the support of patients but also for the palliative doctor to identify wishes for accompanying them to the end with dignity and serenity. The narrative interview favors the construction of an authentic therapeutic relationship. The sick are taken wholly in charge, and they are guaranteed a high quality of life until their very last instant.

Keywords: construction of an authentic therapy relationship, gradual awareness of their terminality, narrative interview, reduce the chaos generated by the desease

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Authors: Brigitta Szabo, Miklosi Monika

Abstract:

Background/Aims: In early childhood, the context of development is the caregiver-child relationship. Maternal attachment style plays a major role in the intergenerational transmission of psychopathology. The aim of this study was to explore the relationship between the mothers’ attachment style, mindful parenting, and perception of the child. Method: Data was collected from 144 non-clinical mothers who have a child below the age of 3 years. Mothers completed self-report questionnaires, including the following scales: a demographic questionnaire, Attachment Style Questionnaire (ASQ), Interpersonal Mindfulness in Parenting Scale (IMP), and the Mothers’ Object Relations Scale (MORS-SF). K-means cluster analysis was used to identify the mothers’ attachment styles. Mediation analyses with Mothers’ Object Relations Scale (MORS-SF) positive emotions and dominance subscales as dependent variables, mothers’ attachment style (ASQ) as an independent variable, and mindful parenting (IMP) as a mediator were conducted. Results: Four attachment styles (secure, preoccupied, fearful, dismissing) were identified. The relationship between mothers’ attachment style and mindful parenting was significant (R2 = .51; F(4,139) = 36.60; p < .001). Compared to the secure attachment style as a reference group, both preoccupied and dismissing styles were related to lower levels of mindful parenting; however, this relationship was the strongest in case of fearful style. In mediation analysis the direct effects of mothers’ attachment style on the perception of the child were not significant (MORS positive emotions: R2= .29; F(5,138) = 11.22; p < .001; MORS dominance: R2= .39 F(5,138) = 17.54, p < .001). However, indirect effects through mindful parenting were significant; higher levels of mindful parenting were associated with higher levels of MORS positive emotions and lower levels of MORS dominance. Conclusions: These findings suggest that attachment styles are related to the perception of the child through mindful parenting. Mindfulness-based parenting training might be useful in case of attachment-related problems to improve the parent-child relationship.

Keywords: mindfulness, mindful parenting, attachement, perception

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