Family Members Of People Research Articles

Animated Character Tool for Improved Communication with Elderly People with Mild Cognitive Impairment

Owing to the increase in the population of elderly people, the number of people suffering from mild cognitive impairment is increasing in several countries. Furthermore, family members of people with mild cognitive impairment, such as reduced function of memory, reasoning, and decision-making, undergo severe stress owing to difficulties in communicating with them. There are, however, few existing technologies to support learning this type of communication to reduce this stress. This study proposes a tool wherein an animated character resembles the behavior of elderly people with mild cognitive impairment in different scenarios to teach how to communicate with them. Fundamental experiments were conducted to confirm the validity of the proposal tool, and results showed that the tool successfully helped users learn how to communicate with elderly people with mild cognitive impairment. Furthermore, we demonstrated the advantages of using an animated character to depict the behavior of people with mild cognitive impairment. We believe the proposed tool enables the imagination of difficult situations and the understanding of communication with the elderly.

Perspectives of key interest groups regarding supervised Consumption sites (SCS) and novel virtual harm reduction services / overdose response hotlines and applications: a qualitative Canadian study

BackgroundSupervised consumption sites (SCS) and overdose prevention sites (OPS) have been implemented across Canada to mitigate harms associated with illicit substance use. Despite their successes, they still contend with challenges that limit their accessibility and uptake. Overdose response hotlines and apps are novel virtual technologies reminiscent of informal “spotting” methods that may address some of the limitations. Here, we strove to qualitatively examine the factors that may encourage or deter utilization of these virtual services and SCS.MethodsA total of 52 participants across Canada were recruited using convenience and snowball sampling methods. These included people with lived and living experience of substance use, family members of people with lived experience, healthcare providers, community harm reduction workers, and virtual harm reduction operators. Semi-structured telephone interviews were conducted and inductive thematic analysis was performed to identify the themes pertaining to SCS and virtual harm reduction.ResultsParticipants viewed overdose response hotline and apps as an opportunity to consume substances without being hindered by logistical barriers (e.g., wait times), fear of law enforcement, invasion of privacy, and more. They also noted that these virtual services provided more flexibility for clients who opt for routes of consumption that are not supported by SCS, such as smoking. Overall, SCS was perceived to be better than virtual services at facilitating social connection, providing additional resources/referrals, as well as prompt response to overdose.ConclusionIn sum, participants viewed SCS and virtual services as filling different needs and gaps. This study adds to a growing body of literature which informs how virtual harm reduction services can serve as useful adjunct to more standard harm reduction methods.

Career Choice and Family Expectations of Individuals With Visual Impairments in Turkey: A Qualitative Study

Introduction: This study aimed to explore the career choice of individuals with blindness or low vision (i.e., visual impairments) and their experiences with the expectations of their families. In societies where family is important, family members can influence the career choices of individuals with visual impairments. Method: This study was carried out in 2022. The online interview method was chosen to collect data due to the difficulties in conducting face-to-face interviews during the COVID-19 pandemic. The participants were 18 adults with visual impairments. Their ages ranged from 22 to 36 years. Participants were asked about the role of their families in their career choices. They were also asked about their expectations from effective career counseling. The researcher used deductive thematic analysis. Results: Four themes emerged from these data: (a) work not school, (b) guaranteed jobs are good enough, (c) daughters should marry, and (d) discrepancies in expectations based on household income. Discussion: As in many low- and middle-income countries, people with visual impairments in Turkey are discouraged from continuing their education. With the exception of affluent families, participants were generally directed to guaranteed or low-skill jobs. Gender stereotypes of families were a career barrier for women with visual impairments. Implications for Practitioners: Because of the essential role played by family members of people with visual impairments in Turkey, career counselors should work with families for effective practice. It is also essential for career counselors to inform families about the education and employment rights of individuals with visual impairments.

Family Members’ Perspectives on the Unmet Care Needs of People Living With Dementia in Nursing Homes

While the number of older people living with dementia grows, savings in public resources leads to situations where services and supports for older people are cut, even in the traditionally generous Nordic welfare states, such as Finland. This development is expected to lead to care poverty, meaning older people are not receiving the services they need. Our aim was to uncover whether care poverty already exists within institutional care for older adults in Finland. Thematic analysis was utilized to study 19 interviews with family members of people with dementia living in a nursing home. Signs of care poverty were found in relation to timeliness and safety of access to long-term care and quality of professional care. In addition, the threshold of questioning the care system was high, and managing disagreements about care with professionals was challenging for the family members. The results raise concerns that reducing long-term care risks the whole concept of welfare states. Family members should be more systematically involved in needs assessment and decision-making concerning the care of older people with dementia.

‘The whole thing is beyond stress’: Family perspectives on the experience of hospitalisation through to discharge for individuals with severe learning disabilities and complex needs

AbstractBackgroundPeople with severe learning disabilities and complex needs are more likely to experience delayed discharge from hospital; however, there is little research into their experience in hospital and as they move out as part of the Transforming Care Programme.MethodsSix family members of people with complex needs who had moved out of hospital took part in four focus groups co‐facilitated with an expert‐by‐experience consultant. Participants' relatives had hospital admissions that ranged from 6 weeks to 11 years. Transcripts were analysed using reflexive thematic analysis. Additional reflections are included from an expert‐by‐experience consultant to capture their unique perspective.ResultsFamily members reported stories of abuse in hospital and parallel experiences of institutionalisation and trauma, resulting in long‐lasting impacts on themselves and their relative. Family members felt let down and undervalued by professionals. They described relief when their relatives moved out of hospital, but there were on‐going difficulties accessing the right support in the community and so stability felt fragile.ConclusionsKey recommendations to support community living include respecting family members' expertise, improving partnership working and offering psychological support for family members and people with complex needs post‐discharge.

Results of inaugural international Down Syndrome Societal Services and Supports survey

PurposeWe previously designed the Down Syndrome Societal Services and Supports Survey (DS-4S) to measure country-specific supports for people with Down syndrome (DS) across multiple life domains (healthcare, education, policy, independence, and community inclusion). We now report and analyze the results. MethodsWe partnered with international DS consortia, who distributed the DS-4S to 154 cumulative members representing over 100 countries. Organizations were included if they had a holistic focus on the lives of people with DS and if at least 50% of their members either have DS or are family members of people with DS. Factor analysis was used to analyze the results. ResultsWe received survey responses from 55 different organizations in 50 countries who met inclusion criteria. Each country had complete data for at least 4 of the 5 domains. The lowest 5 scores were from countries in Africa and Asia; the highest 5 scores were in Europe and North America. ConclusionThe responses to the DS-4S stratified countries within each surveyed domain. The DS-4S can now be used to track countries’ progress over time and to determine which countries have best practices that might be replicated. We will publish the results and update them biennially at www.DownSyndromeQualityOfLife.com.

Associations between facial expressions and observational pain in residents with dementia and chronic pain.

To identify specific facial expressions associated with pain behaviors using the PainChek application in residents with dementia. This is a secondary analysis from a study exploring the feasibility of PainChek to evaluate the effectiveness of a social robot (PARO) intervention on pain for residents with dementia from June to November 2021. Participants experienced PARO individually five days per week for 15 min (once or twice) per day for three consecutive weeks. The PainChek app assessed each resident's pain levels before and after each session. The association between nine facial expressions and the adjusted PainChek scores was analyzed using a linear mixed model. A total of 1820 assessments were completed with 46 residents. Six facial expressions were significantly associated with a higher adjusted PainChek score. Horizontal mouth stretch showed the strongest association with the score, followed by brow lowering parting lips, wrinkling of the nose, raising of the upper lip and closing eyes. However, the presence of cheek raising, tightening of eyelids and pulling at the corner lip were not significantly associated with the score. Limitations of using the PainChek app were identified. Six specific facial expressions were associated with observational pain scores in residents with dementia. Results indicate that automated real-time facial analysis is a promising approach to assessing pain in people with dementia. However, it requires further validation by human observers before it can be used for decision-making in clinical practice. Pain is common in people with dementia, while assessing pain is challenging in this group. This study generated new evidence of facial expressions of pain in residents with dementia. Results will inform the development of valid artificial intelligence-based algorithms that will support healthcare professionals in identifying pain in people with dementia in clinical situations. The study adheres to the CONSORT reporting guidelines. One resident with dementia and two family members of people with dementia were consulted and involved in the study design, where they provided advice on the protocol, information sheets and consent forms, and offered valuable insights to ensure research quality and relevance. Australian and New Zealand Clinical Trials Registry number (ACTRN12621000837820).

N-ECCO Grant Supporting psychosocial and emotional well-being and resilience in family members of people with IBD: an intervention co-design and feasibility study

Abstract Background and Aims This ongoing PhD project seeks to develop a person-centred, evidence-based, theoretically informed prototype intervention to support psychosocial and emotional well-being and resilience in people with IBD’s family members (FMs). PhD project focuses on the intervention development and feasibility testing. The development phase has already been undertaken using a co-design approach informed by Design Thinking. A systematic review and qualitative research have been conducted and published, and co-design workshops have been held with people with IBD (n=4), FMs (n=9), and IBD nurses (n=2), revealing a preference for online-based intervention. Therefore, the aim of this study is to translate the paper-based intervention prototype into electronic format. The online prototype will be a) tested for acceptability and b) effect signal. The feasibility of the study design will be evaluated. Methods A sequential mixed methods approach, based on the UK Medical Research Council (MRC) Evaluation Framework. The intervention feasibility study will test the acceptability of content and delivery of the intervention and ascertain active feedback. The feasibility of the study design will be evaluated the recruitment, data collection, retention, and analysis strategies. A two-arm feasibility RCT with nested qualitative evaluation will be used to evaluate the newly developed intervention among 60 FMs. Participants will be recruited via Crohn’s & Colitis UK and Bowel Research UK charities. The 60 participants will be randomly allocated into intervention and control groups using 2:1 randomisation. The qualitative component will use purposive sampling from the intervention arm to elicit feedback on the content and format with up to 20 participants. Anticipated Impact Results from this intervention development and feasibility study will help revise the intervention, incorporate changes to the study protocol (if necessary), and develop a large-scale RCT for efficacy trailing of a complex intervention to benefit service users.

Support group for carers as an example of helping family members of people with dementia

Support group for carers as an example of helping family members of people with dementia

P120: Peer groups that support the mental health of older adults

The City of Helsinki provides peer support groups for older adults with substance abuse or mental health issues: For older adults with substance abuse issues (14 meetings)For elderly relatives, friends and family members of people with substance abuse issues (12 meetings)For older adults with depression symptoms (12 meetings)For older adults who have lost a loved one (8 meetings)Peer support groups meet once a week at senior centres and are led by social instructors. The maximum group size is limited to ten people. Group instructors have manuals to guide their work, and attendees follow group-specific assignment books. The first three groups listed above stem from cognitive methods, and the group for those who have lost a loved one stems from a meaning-centred approach.Before the group’s first get-together, instructors meet all potential group members in person to ensure that joining the activity is a suitable and beneficial option for them. Although the groups have different discussion topics and assignments, all are primarily based on openness and peer support. Two months after the group’s last get-together, members will meet up again, and the instructors will assess whether someone needs extra support and refer them onward.Overall, feedback on the peer support groups has been positive. Attendees feel participating has brought change to their lives, and many reported reduced alcohol consumption and improved mood. In their feedback, attendees gave thanks to interesting discussion themes, an open and trusting atmosphere and the importance of being able to communicate with peers of the same age.Peer support groups are a cost-effective and functional way to support the mental health of older adults, especially in the early detection and prevention of more severe problems.

How affected family members communicate about their loved one’s non-medical opioid use

Family members of people who misuse opioids frequently experience stigma due to their association with non-medical opioid use (NMOU). Stigma may affect how family members communicate about NMOU and seek social support. Guided by communication privacy management theory, this study sought to understand how affected family members (AFMs) communicate about NMOU within and outside of the immediate family. In-depth interviews were conducted with 34 adults with an immediate relative with NMOU. Qualitative analyses utilized a common iterative approach. Findings identified complex dialectical tensions that families traverse in both wanting to conceal stigmatizing information while simultaneously wanting to disclose information to engage support for themselves during stressful experiences. Strategies to resolve this tension included focusing on the good, functional updates, and moving from closed to open communication boundaries. Treatment for individuals with NMOU should engage families and assist with the resolution of communication privacy management tensions.

“She starts to be her old self again”: familial reflections on pre- and post-onset identity in people with Alzheimer’s and behavioural-variant frontotemporal dementia

We investigated perceptions of identity in Alzheimer’s disease and behavioural-variant frontotemporal dementia. We asked family members of people with dementia to describe them before and after onset of the disease, comparing across type (Alzheimer’s disease versus behavioural-variant frontotemporal dementia) and time period. Family members’ perceptions of people with dementia changed over time. Compared with Alzheimer’s disease, behavioural-variant frontotemporal dementia was perceived to cause greater disruption to identity and more often associated with negative moral traits. We found a relationship between assessments of moral character and perceived self-continuity. Our data revealed different ways family members navigate stability and change in the identity of their loved ones with dementia.

Distress, burden, and wellbeing in siblings of people with mental illness: a mixed studies systematic review and meta-analysis.

Family members of people with mental illness (MI) may experience a host of psychological adversities such as increased stress, burden, and reduced wellbeing. However, relatively little is known about siblings. This study aimed to characterise the experience of distress (viz. depressive and anxiety symptoms), burden, and wellbeing in siblings of people with MI. Studies reporting on quantitative measures of depression, anxiety, burden, or wellbeing in siblings; and/or qualitative findings on siblings' experience were eligible. The literature search was conducted up until 20th October 2022. Sixty-two studies comprising data from 3744 siblings were included. The pooled mean percentage of depressive symptoms fell in the mild range at 15.71 (k = 28, N = 2187, 95% CI 12.99-18.43) and anxiety symptoms fell in the minimal range at 22.45 (k = 16, N = 1122, 95% CI 17.09-27.80). Moderator analyses indicate that siblings of people with a schizophrenia spectrum disorder experience greater depressive symptoms than siblings of people with other types of MI (β = -16.38, p < 0.001). Qualitative findings suggest that individuals may be particularly vulnerable during their siblings' illness onset and times of relapse. Limited communication, confusion about MI, and the need to compensate may contribute to siblings' distress and/or burden. Siblings' experience of wellbeing and caregiving were closely related. This review highlights the complex psychological experience of siblings and the need for greater research and clinical support for this important yet often overlooked cohort.

Naloxone Knowledge and Attitudes Towards Overdose Response Among Family Members of People who Misuse Opioids.

Providing family members of individuals with opioid use disorders (OUD) naloxone is a cost-effective way to prevent overdose deaths. However, misconceptions and negative attitudes towards naloxone hinder family engagement with naloxone programs. This study examines factors associated with knowledge and attitudes toward naloxone among adults with close family members who misused opioids. Adults with family members (parent, step-parent, child, spouse, sibling, or step-sibling) who misused opioids (N = 299) completed a web-based survey. Participants were recruited through treatment providers, community groups, and social media. Surveys assessed naloxone knowledge, attitudes toward overdose response, demographics, completion of naloxone training, attitude toward medications for OUD, and family members' overdose history. Multiple regression was used to identify factors associated with naloxone knowledge (Model 1) and attitudes toward overdose response (Model 2). A graduate degree (B = .35, p < .003) and a history of overdose (B = 0.21, p = .032) were associated with greater naloxone knowledge. Age (B = .11, p < .001), race/ethnicity (B = -1.39, p = .037), naloxone training (B = 2.70, p < .001), and more positive attitude toward medications for OUD (B = 1.50, p = .003) were associated with attitudes toward overdose response. Family members are potential allies in reducing drug overdose deaths, and families may need broader education about naloxone. Awareness of previous overdose was associated with greater naloxone knowledge. Findings related to race/ethnicity suggest the need to reach family members of minoritized racial groups to provide access to naloxone training. Findings point to where education and distribution efforts may focus on increasing knowledge and improving attitudes among those closest to people with OUD.

Coping e processo de luto em familiares e pessoas significativas de vítimas mortais de COVID-19

Background: The constraints imposed by the COVID-19 pandemic hindered the experience of grief and promoted the occurrence of complicated grief. Objective: To determine the prevalence of complicated grief in family members of people who died from COVID-19; to verify whether coping strategies can predict grief.Methodology: This is a cross-sectional observational study with descriptive-correlational analysis using a non-probability sample of 86 participants. The data were explored using descriptive and inferential statistics. Results: Fifty-two family members (60.5%) experienced complicated grief. Emotion-oriented coping correlated positively with grief in the Global dimension (p = 0.29; p = 0.01), the Denial and anger dimension (p = 0.35; p &lt; 0.001), and the Depressive dimension (p = 0.28; p = 0.01). Task-oriented&nbsp; coping correlated negatively with the Denial and anger dimension (p = -0.24; p = 0.03). Conclusion: The participants present a high probability of experiencing complicated grief. Thus, the implementation of psychological support measures is recommended.

'I no longer know that person': Experiences of families living with someone using crystal methamphetamine.

Crystal methamphetamine ('ice') use is a large and growing worldwide problem, yet few research studies have explored the impact of crystal methamphetamine use on affected friends and family members. We explored the experiences and narratives of family members and friends of people who use methamphetamine to inform the development of a Family and Friend Support Program. This paper reports on a subset of findings from a mixed method study, which sought to better understand the experiences of family members and friends of people who use methamphetamine. Participants were recruited via Facebook advertising and asked to complete a survey outlining their experiences. At the end of the survey, participants were invited to be interviewed by a clinical psychologist on the research team, to discuss their experiences in greater depth; seventeen people agreed to be interviewed. This paper is based on a qualitative thematic analysis of these interviews using Braun and Clarke's 6-stage approach to identify key areas of concern for friends and family members of people who use methamphetamine. Through thematic analysis, five key themes were developed, namely: (1) loss, (2) stigma, (3) support (or lack thereof), (4) ways of coping, and (5) the value in sharing personal experiences. The results of this study revealed the profound sadness, frustration and loss friends and family members experienced when caring for a loved one who uses methamphetamine. This loss was further complicated by societal stigma surrounding the use of methamphetamine, which often extended to friends and family members themselves. Since experiences of grief and loss were interwoven across the three themes, concepts of ambiguous loss, disenfranchised grief, and narrative constructivist approaches to understanding loss, were applied to the discussion of results. This study provides a more complete picture of family and caregiver experiences when caring for a loved one using methamphetamine, which may further help inform the design of intervention programs. Implications for future research and practice with this population are considered.

Dementia-Friendly Communities: Exploring Terms used to Describe Dementia, Attitudes and Reactions Towards People with Dementia in Ilembe District, South Africa.

People with dementia often experience stigma, abuse and social exclusion in their communities. Thus, developing dementia-friendly communities is a priority in the fight against dementia. This study investigated communities' attitudes towards people with dementia by exploring the colloquial terms referring to dementia and the social tolerance toward people with dementia. A cross-sectional household study, using individual interviews, was conducted in the iLembe district, South Africa, with 300 participants aged ≥18years. Data was collected between 2018 and 2019. Data was analysed using descriptive and reflexive thematic analyses. Two themes related to local dementia terms were identified: (i) There are no known local terms synonymous with the term dementia; (ii) Communities use inaccurate and stigmatizing terms to describe dementia. The terms identified did not accurately describe dementia, and others had negative connotations toward people with dementia. Although most participants reported being tolerant, neighbourly, and friendly towards people with dementia, their tolerance decreased when personal interaction was required with a person with dementia. Most participants reported a more agreeable attitude when considering being neighbours rather than family members of people with dementia, and 50.3% reported that their communities discriminate against older people with dementia. The identified dementia terms did not promote dementia-friendly societies. Appropriate dementia terms are crucial for changing social intolerance and negative perceptions of people with dementia and promoting a dementia-friendly culture in South African communities. Terms that encourage and perpetuate stigma against people with dementia must be replaced with terms that promote inclusion and tolerance.

N02 Our life is a roller-coaster! A qualitative phenomenological study exploring the impact of IBD on family members

Abstract Background IBD significantly impacts individuals’ and their family members’ physical, psychosocial and emotional wellbeing. These then reduce quality of life. Whilst there are studies exploring the impact of IBD on children and their families, little is known about the impact of IBD on family members of adults with IBD. This study explored the impact of IBD on family members of adults diagnosed with IBD, what coping strategies they use and what support they need to manage the psychosocial and emotional burdens associated with supporting patients in managing their IBD. Methods An interpretive phenomenological study conducted, using an individual in-depth, semi-structured online interviews via MS Team, Zoom, or telephone. The interviews were audio recorded and transcribed verbatim. An inductive and deductive reflexive thematic analysis followed the Braun and Clark technique. Results Forty-three participants, including 17 people with IBD and 26 family members (parents, children, siblings, partners), were purposively selected. Three main themes and accompanying subthemes were created: (1) “Life is a roller coaster” (2) “There have been a lot of bridges to cross along the way” and (3) “My life would be better if...” Participants revealed that the impact of IBD on family members has better and worse aspects in terms of emotional wellbeing, relationship, pressure around roles and responsibilities, day-to-day burden, and siblings’ suffering. Positive coping strategies such as creating meaningful social networks, learning through living with the condition, and open communication were used by some. However, many used negative coping strategies such as avoidance, denial, and “battling on” without asking for help. To mitigate the negative impact of IBD, many family members expressed the need for support. This included proactive and effective communication from healthcare professionals, referral to meaningful sources of information and support, and support groups. Conclusion IBD impacts the emotional and psychosocial wellbeing of family members in both positive and negative ways. Some family members were able to use positive coping strategies, however many developed negative coping which affected their daily life. Interventions that support families to communicate better about the impacts of the condition on their wellbeing and/or provide psychosocial support will help family members of people with IBD better cope with disease and have a more fulfilling life. Health professionals need to understand the impact of IBD on family members and support them to cope with the psychosocial and emotional demands of the condition as well as the physical implications.

Designing an international survey for organisations serving people with Down syndrome.

Down syndrome is the most common liveborn genetic condition. However, there are no surveys measuring societal services and supports for people with Down syndrome. We developed a questionnaire so that initiatives could be targeted towards countries most in need of assistance. We formed a geographically diverse group of physicians, family members of people with Down syndrome, and members of Down syndrome not-for-profit organisations to create a survey of societal services and supports. We used a modified Delphi method and disseminated the survey to Down syndrome non-profit organisations worldwide. Our survey consists of 61 items categorised within five domains: Education, Community Inclusion, Independence, Healthcare, and Social and Policy Issues. We developed a survey to measure societal services and supports available to people with Down syndrome as perceived by organisational leaders. Our methods might serve as a blueprint for other populations of people with intellectual and developmental disabilities.

Mediating Role of Rumination Between Anger and Anxious-Depressive Symptomatology in Family Members of People with Gambling Disorder

Gambling disorder is characterized by a behavioural pattern of dysfunctional gambling that persists despite its negative implications in different areas of people’s daily life. One of the most negatively affected areas is the one related to family members. This study aimed, firstly, to study the differences between family members of people with gambling disorder and a general population sample in anger (state, trait, expression-out, expression-in. control-out and control-in), rumination (brooding, reflection and total), and anxiety and depression. The second aim was to analyse the correlation between these variables in the family members of people with gambling disorder, and thirdly, to analyse the mediating role of rumination between anger, anxiety and depression. This study consisted of 170 people, of whom 87 were family members of people with a gambling disorder, and 83 were from the general population. Instruments measuring anger, anxiety, depression, and ruminative responses were administered. Results showed that family members had significantly higher scores in anger (state), depression, anxiety, rumination (total and brooding). Also, results showed that anger correlated positively and significantly with rumination, depression and anxiety, which also correlated positively and significantly with each other. Third, rumination mediated the relationship between the following variables: anger (state) and depression; anger (trait) and anxiety and depression; anger (external expression) and anxiety and depression. A complete mediating effect was found in the latter case and a partial mediating effect in the first two cases. In conclusion, it is found that having a family member with a gambling disorder may increase levels of anger, anxiety, depression and rumination. Furthermore, it is shown that working on rumination may reduce depression and anxiety in family members of gamblers.