Un análisis integrado entre la calidad de vida y las necesidades de apoyo de personas adultas con discapacidad intelectual en Chile / An integrated analysis between the quality of life and the support needs of adults with intellectual disabilities in Chile

El paradigma de apoyos y el de calidad de vida se han transformado en guías fundamentales para los avances en el ámbito de la discapacidad intelectual (DI). Con base en una muestra de 93 personas adultas con DI, se analiza, desde un enfoque cuantitativo no experimental, la relación entre la calidad de vida y las necesidades de apoyo, aplicando la escala INICO-FEAPS y la escala de Intensidad de Apoyos (SIS) para cada constructo. Los principales resultados evidencian que existe una relación fuerte e indirecta entre calidad de vida y necesidades de apoyos, y también la relevancia de analizar dichos resultados desde variables como grado de discapacidad, sexo o nivel socioeconómico. La discusión permite inferir la necesidad de discutir nuevas estrategias en torno a categorías como el grado de discapacidad, la autodeterminación e inclusión social, como elementos facilitadores de la calidad de vida y apoyos desde un enfoque integral que contribuya al desarrollo de estrategias de programas sociales para la población con DI. (AU)

The support paradigm and the quality of life paradigm have become fundamental guides for progress in the field of Intellectual Disability (ID). Based on a sample of 93 adults with ID, the relationship between Quality of Life and Support Needs is analyzed from a non-experimental quantitative approach, applying the INICO-FEAPS scale and the SIS Support Intensity scale for each construct. The main results show that there is a strong and indirect relationship between quality of life and support needs, and the relevance of analyzing these results from variables such as the degree of disability, sex or socioeconomic level. The discussion allows us to infer the need to discuss new strategies around categories such as the degree of disability, self-determination and social inclusion, as facilitating elements of quality of life and supporting a comprehensive approach that contributes to the development of social program strategies for the population with ID. (AU)

Un análisis integrado entre la calidad de vida y las necesidades de apoyo de personas adultas con discapacidad intelectual en Chile / An integrated analysis between the quality of life and the support needs of adults with intellectual disabilities in Chile

El paradigma de apoyos y el de calidad de vida se han transformado en guías fundamentales para los avances en el ámbito de la discapacidad intelectual (DI). Con base en una muestra de 93 personas adultas con DI, se analiza, desde un enfoque cuantitativo no experimental, la relación entre la calidad de vida y las necesidades de apoyo, aplicando la escala INICO-FEAPS y la escala de Intensidad de Apoyos (SIS) para cada constructo. Los principales resultados evidencian que existe una relación fuerte e indirecta entre calidad de vida y necesidades de apoyos, y también la relevancia de analizar dichos resultados desde variables como grado de discapacidad, sexo o nivel socioeconómico. La discusión permite inferir la necesidad de discutir nuevas estrategias en torno a categorías como el grado de discapacidad, la autodeterminación e inclusión social, como elementos facilitadores de la calidad de vida y apoyos desde un enfoque integral que contribuya al desarrollo de estrategias de programas sociales para la población con DI. (AU)

The support paradigm and the quality of life paradigm have become fundamental guides for progress in the field of Intellectual Disability (ID). Based on a sample of 93 adults with ID, the relationship between Quality of Life and Support Needs is analyzed from a non-experimental quantitative approach, applying the INICO-FEAPS scale and the SIS Support Intensity scale for each construct. The main results show that there is a strong and indirect relationship between quality of life and support needs, and the relevance of analyzing these results from variables such as the degree of disability, sex or socioeconomic level. The discussion allows us to infer the need to discuss new strategies around categories such as the degree of disability, self-determination and social inclusion, as facilitating elements of quality of life and supporting a comprehensive approach that contributes to the development of social program strategies for the population with ID. (AU)

Developing a screening instrument for underlying core domains of communicative competence in children with communication support needs.

A socio-neurocognitive approach to augmentative and alternative communication (AAC) shows several underlying domains of communicative competence: Attention, perception, cognition, memory, orientation, socio-emotional development, motor skills, and language. To determine developmental markers of these underlying core domains of communicative competence in children with communication support needs, we developed a new screening instrument. The present article consists of three consecutive studies. In study 1, we constructed the first version of the screening instrument based on a sample of both children without disabilities and children with Down syndrome. In study 2, we confirmed the reliability (i.e., internal consistency) of the screening instrument in a new group of young children with typical development and established concurrent validity with the Early Language Scale. In study 3, we established concurrent validity with the Communication Matrix in a clinical sample of children with communication support needs. The screening instrument can be used in clinical practice as part of AAC assessment to provide comprehensive insights into strengths and weaknesses in the underlying core domains of communicative competence of children with communication support needs.

Special education teachers' perspectives of effective pre-service training practices in systematic instruction for students with extensive support needs.

This survey study examined 164 in-service special education teachers' perceptions of training strategies in their cross categorical teacher preparation program in the United Sates for developing knowledge and skills in systematic instruction, an evidence-based practice for students with extensive support needs. Both classroom-based and field-based training strategies were evaluated along with teachers' perceptions of the contribution and importance of the various training strategies. Results from Chi-square tests, Pearson correlations, multivariate analysis of covariance, and repeated measures of analysis of covariance indicated that teachers felt prepared to implement systematic instruction after exiting their program and after teaching students with disabilities, and the perceived effectiveness of training strategies was related to teacher experience. Teachers perceived modeling and receiving performance feedback in both university classrooms and field-based settings to contribute to their knowledge and skill development in systematic instruction. We present the results in terms of implications for practice and future research.

Exploring the Support Needs of Chinese Family Carers of People Living with Dementia in New Zealand during the COVID-19 Pandemic: A Resilience Resources Framework Perspective.

Caring for people living with dementia during the novel coronavirus disease 2019 (COVID-19) pandemic significantly impacted the emotional, physical, and social well-being of carers. However, no study has focused on the well-being of Chinese carers of people living with dementia in New Zealand during the pandemic. This study aimed to explore the support needs of Chinese carers of people living with dementia in New Zealand during the COVID-19 pandemic. Semi-structured interviews were conducted by two bilingual and bicultural researchers. Thematic analysis was used to explore the resilience resources for Chinese carers. Twelve Chinese carers were recruited from four community organizations in New Zealand. Four themes were identified: (1) social isolation, (2) emotional loneliness, (3) ambivalent feelings of being a carer, and (4) a variety of unmet needs. The findings of our study provide new insights into the multiple support needs of Chinese carers of people living with dementia during the COVID-19 pandemic. Implications for practice include the establishment of culturally appropriate care support services and the development of tailored resilience-building interventions to address the unmet needs of Chinese carers of people living with dementia.

Cross-condition risk and protective factors for psychosocial distress in parents and carers of children and young people with appearance-affecting conditions and injuries.

Alongside typical parenting challenges, initial condition-specific research suggests thadifferent experiences and support needs.t parents of children with different visible differences may experience similar psychosocial difficulties. Despite this, large-scale cross-condition research to identify risk and protective factors for parental distress and psychosocial adjustment has been lacking. Two hundred and nine parents and carers of children with a range of visible differences completed an online survey comprised of standardised outcome measures, study-specific measures, and open-ended questions. Multiple regression modelling identified possible risk and protective factors, and data collected via open-ended questions were analysed using content analysis. Findings support themes previously identified in small-scale cross-condition qualitative research with parents of children with visible differences. Risk factors for parental negative affect and stress included parental reports of the noticeability of their child's visible difference and teasing. Protective factors included good parent-child communication, self-compassion, knowledge of their child's condition and satisfaction with treatment. The risk and protective factors identified provide important insight into the experiences of this parent population and indicate possible avenues for psychosocial intervention.

Job demands and resources perceived by hybrid working employees in German public administration: a qualitative study.

BACKGROUND: Hybrid working arrangements that combine remote and office work are on the rise. Although hybrid work has been associated with mental health benefits in employees, challenges in the transformation to hybrid persist particularly in public administration organizations which have been connected to a pronounced culture of presence and inadequate technical infrastructure. Further evidence on the link between hybrid working conditions and employee health is needed. To support the establishment of healthy hybrid working conditions, this study aims to identify employees' job demands, resources and support needs in public administration. METHODS: Semi-structured interviews were conducted with N = 13 employees who work hybrid in public administration organizations in Northern Germany between February and May 2023. Interviewees were asked about their perceived job demands, resources, and support needs in hybrid work. The data was analyzed in a deductive-inductive approach of qualitative content analysis, primarily supported by the job demands-resources model as a theoretical framework. RESULTS: Several job demands, e.g., an increase in work and meetings, and resources such as personal freedom and responsibility, were identified in the context of hybrid work. A multitude of the reported job resources and demands relate to work organization and social relationships. The results disclose discrepancies between participants' experiences of job demands and resources, underlining the subjectivity of employees' perceptions of hybrid working conditions. Interviewees' support needs for hybrid work also varied, encompassing structural-level aspects such as increased acceptance and promotion of hybrid work in the organization as well as behavioral-level aspects, for instance, strategies and self-discipline for boundaries and structure. CONCLUSIONS: This study provides a first comprehensive overview of the job demands, resources and support needs in hybrid work in public administration. This study builds an important basis for further research to understand the impact of hybrid working conditions on health-related employee outcomes. The identified support needs provide a valuable point of reference for health-promoting hybrid working conditions which public administration employers should begin establishing as early as possible in the ongoing transition to hybrid work.

Future Goal Aspirations of Students With Extensive Support Needs: Findings From NLTS 2012.

This study used data from the National Longitudinal Transition Study 2012 (NLTS 2012) to explore the future goal aspirations of students with extensive support needs who participate in alternate assessments, compared to other students with extensive support needs and to students with other disabilities. We examined students' individualized education program (IEP)/transition planning meeting experiences and postschool goals in relation to their functional, communication, and self-advocacy skills, as well as their school/community support. Students with other disabilities held higher expectations than all students with extensive support needs for future participation in postsecondary education, employment, independent living, and financial independence. All students had higher postschool goal expectations than their parents. Implications for supporting students with extensive support needs and directions for future research and practice are discussed.

Toward a functional classification for autism in adulthood.

Autism spectrum disorder (ASD) is a heterogeneous condition that affects development and functioning from infancy through adulthood. Efforts to parse the heterogeneity of the autism spectrum through subgroups such as Asperger's and Profound Autism have been controversial, and have consistently struggled with issues of reliability, validity, and interpretability. Nonetheless, methods for successfully identifying clinically meaningful subgroups within autism are needed to ensure that research, interventions, and services address the range of needs experienced by autistic individuals. The purpose of this study was to generate and test whether a simple set of questions, organized in a flowchart, could be used in clinical practice and research to differentiate meaningful subgroups based on individuals' level of functioning. Once generated, subgroups could also be compared to the recently proposed administrative category of Profound Autism and to groupings based on standardized adaptive measures. Ninety-seven adults with autism or related neurodevelopmental disorders participating in a longstanding longitudinal study, or their caregivers if they could not answer for themselves, completed phone interviews when the participants were ~30 years old. Information from these phone interviews was used to generate vignettes summarizing characteristics and aspects of the daily lives of each participant (e.g., language level, vocational activities, and social relationships). Three expert clinicians then used these vignettes to classify each participant based on their level of support needs. Meaningfully distinct subgroups within the sample were identified which could be reliably distinguished from one another. Implications of such categorizations and future directions are discussed.

Risk of cancer-related distress by age in colorectal cancer survivors: The modulatory role of unmet support needs.

To explore the modulating role of unmet support needs on the relationship between age and the prevalence of cancer-related distress in colorectal cancer (CRC) survivors. Two hundred and forty four participants completed the questionnaires; linear regression and odd ratios were calculated. Both the prevalence of needs and their interaction with age were predictors of cancer-related distress. The risk of significant clinically distress associated with physical and socio/family needs was high in both age subgroups. Higher risk of clinical distress was associated with life perspective, sexual, occupational and health care needs in the younger subgroup and with needs for specific support resources in the older subgroup. In reducing cancer-related distress, two key issues arise: (i) the importance of managing the persistent negative symptoms following CRC treatment in survivors of any age and (ii) the need for a differentiated attention to other care needs based on the survivor's age.

Exploring the lived experiences of individuals with Parkinson's disease and their relatives: insights into care provision experiences, disease management support, self-management strategies, and future needs in Germany (qualitative study).

BACKGROUND: Parkinson's disease (PD) significantly impacts the health-related quality of life of affected individuals and their relatives. In order to support the affected individuals and their families in coping with PD, it is essential to offer comprehensive information about their experiences. A comprehensive understanding of their lived experiences with the disease, the healthcare system, applied self-management strategies and their needs is considered crucial for developing a PD support program. Therefore, we aimed to explore the lived experiences and support needs of individuals with PD and their relatives in Germany. METHODS: This non-interventional, qualitative study conducted an explorative status quo and needs assessment. It generated knowledge through semi-structured focus groups and interviews with individuals with PD at various disease stages and their relatives. The interviews were digitally recorded, transcribed verbatim, and analysed using content analysis. RESULTS: Fifty-two individuals with PD and 29 relatives participated in eight focus groups and 13 paired and 13 individual interviews. Four themes with corresponding subthemes emerged: (1) experiences, revealing individuals' experiences around their diagnosis and with disease-specific care provision; (2) management support offers, clarifying who provides support and the type of support offered; (3) self-management, including comprehensibility, meaningfulness and manageability; and (4) future needs, differentiating between deficits and needs. Most participants expressed a sense of abandonment when obtaining self-management strategies and mastering their lives with PD, often referred to as 'life 2.0'. They identified the lack of structured and adequate provision of information, system orientation and social awareness. CONCLUSIONS: In Germany, there is an urgent need for a comprehensive PD care program that addresses the needs of individuals with PD and their relatives from the start of their care trajectory. It could assist individuals in gaining a comprehensive understanding of the disease, obtaining self-management strategies, building a support network, and becoming experts in self-managing their disease. Moreover, it may positively influence their care trajectory and reduce burdens, such as overburdening, fear of progression, and health anxiety. TRIAL REGISTRATION: German Clinical Studies Register ( https://www.drks.de/DRKS00030090 , No. DRKS00030090, Date of registration: 15.12.2022).

"A sincere 'how are you?' is already a sign of acknowledgement that you're there too." - Interview study on the support needs of adolescents and young adults (AYAs) living with a parent with cancer.

PURPOSE: Parental cancer brings changes and challenges which affect the whole family. Evidence shows heightened psychosocial risk among the offspring. Research among adolescents and young adults (AYAs) facing parental cancer has mainly focused on these psychosocial problems. As a reaction, there has been an increase in research on the needs of this population, since this knowledge is crucial for developing appropriate support. Despite this increase, some AYAs are still underrepresented, namely those over eighteen years old and those who have a parent with incurable cancer. Moreover, the factors hampering or fostering access to and receipt of support addressing their needs are under-investigated. Increasing our understanding of these issues is crucial to developing more effective support interventions for these young people. Our aim was therefore to gain insight into the perceived support needs of AYAs who have a parent with cancer, including the mentioned underrepresented subgroups, and the perceived factors facilitating or hindering their use of support. METHODS: We conducted semi-structured interviews with 17 AYAs who have a parent with cancer of any type and stage, which were analyzed using conventional Qualitative Content Analysis (QCA). RESULTS: Six main categories emerged from the data, encompassing various subcategories: 1) Needs surrounding the time of disclosure, 2) Information needs, 3) Informal support needs, 4) Need for effective personal coping strategies, 5) Formal support needs, and 6) Contextual and medical factors affecting support needs. AYAs perceived family members, friends and teachers as important sources of informal support, but lacked contact with peers who also have a parent with cancer. They expressed a need for formal informational and emotional support from their parent's medical team, (onco)psychologists, and their general practitioner. AYAs faced barriers in accessing formal support. A proactive attitude from healthcare providers and information about available support would help them meet their needs. Furthermore, we shed new light on needs and issues in post-secondary education. CONCLUSIONS: AYAs who are living with their parent with cancer experience informational, emotional, and practical needs in multiple contexts, such as the home, school, leisure and hospital environment. They identify their informal and formal network as important key figures in addressing these needs.

A three-years follow-up of extra intensive support for individuals with intellectual disability and severe challenging behaviour in the Netherlands.

Adults with Intellectual Disability who show severe challenging behaviour need intensive individual support. If intensive support proves to be insufficient, extra intensive support can be provided in the Netherlands, which is characterized by more time for individual care. The present study evaluates the impact of extra intensive support over time. Client characteristics of adults receiving intensive support (IS, N=70) or extra intensive support (IS+, N=35) are compared and the impact of provided support on challenging behaviour (Developmental Behaviour Checklist-Adults), adaptive behaviour (Vineland II), and Quality of Life (San Martin Scale) is evaluated over a three years period. Compared to adults receiving intensive support, those receiving extra intensive support initially showed higher intensity of challenging behaviour, higher number of mental health diagnoses and stronger focus on goals to reduce challenging behaviour. Over time, intensity of challenging behaviour decreased in adults receiving extra intensive support, although Quality of Life and adaptive functioning did not improve. Results show that the indications for receiving extra intensive support are clear and that the extra support is effective over time. It is concluded that extra individual support is serving those who need this support.

Determinants of Referral Outcomes for Victim-Survivors Accessing Specialist Sexual Violence and Abuse Support Services.

Sexual violence and abuse (SVA) is highly prevalent globally, has devastating and wide-ranging effects on victim-survivors, and demands the provision of accessible specialist support services. In the UK, Rape Crisis England & Wales (RCEW), a voluntary third sector organization, is the main provider of specialist SVA services. Understanding the profile of victim-survivors who are referred to RCEW and their referral outcomes is important for the effective allocation of services. Using administrative data collected by three Rape Crisis Centres in England between April 2016 and March 2020, this study used multinomial regression analysis to examine the determinants of victim-survivors' referral outcomes, controlling for a wide range of potentially confounding variables. The findings demonstrate that support needs, more so than the type of abuse experienced, predicted whether victim-survivors were engaged with services. Particularly, the presence of mental health, substance misuse and social, emotional, and behavioral needs were important for referral outcomes. The referral source also influenced referral outcomes, and there were some differences according to demographic characteristics and socioeconomic factors. The research was co-produced with stakeholders from RCEW, who informed interpretation of these findings. That victim-survivors' engagement with services was determined by their support needs, over and above demographic characteristics or the type of abuse they had experienced, demonstrates the needs-led approach to service provision adopted by RCEW, whereby resources are allocated effectively to those who need them most.

'Too young to sit at home': a qualitative study conducted among employees with young-onset dementia and their relatives.

OBJECTIVES: Young-onset dementia (YOD) symptoms often first present in the workplace, resulting in work performance challenges and eventually loss of employment. This study aims to investigate the experiences, work values, and support needs of employees with YOD and their relatives. METHOD: Semi-structured interviews were conducted to explore the experiences, work values, and support needs of (former) employees with YOD and their relatives. Subsequently, separate focus group discussions were conducted for employees and relatives to review and prioritize interview findings. Inductive thematic analysis was applied to both datasets. RESULTS: A total of 15 interviews (six employees; nine relatives) and four focus group discussions (ten employees; six relatives) were conducted. Six themes emerged, with five revolving around the central theme: desire to work. The other themes represent essential contributing factors, including importance of receiving a YOD diagnosis; knowledge, awareness, and understanding regarding YOD; open communication, joint decision making, and collaboration; work adjustments, involvement, and support; phasing out work and future perspectives. CONCLUSION: The findings highlight a strong desire to work post-YOD diagnosis, serving as a foundation for developing workplace support tools and guidance. This has the potential to help individuals with YOD preserve their self-confidence and identity while working within their capabilities.

An Initial Feasibility Trial of Providing Yoga in School for Children with Additional Support Needs.

Yoga is used widely as a therapeutic tool for physical and mental well-being. However, greater understanding of the effect yoga may have on young people who require additional support for learning is warranted. Therefore, the aim of the present study was to assess the feasibility of delivering and evaluating an 8-week school-based yoga program targeted to children with additional support needs in a mainstream primary school. Data were collected from 11 pupils (aged 4-12) with additional support needs. The Behavior Rating Inventory of Executive Function and Strengths and Difficulties Questionnaire were completed pre- and postintervention by parents and the pupil's schoolteachers. Observation of the yoga class engagement was conducted at baseline, midway through, and at the end of the intervention. A visual adaptation of the Children's Feeling Scale was completed each week pre- and post-yoga class by each student. Qualitative measures, including a parent feedback questionnaire, interview with the yoga instructor, and focus group with the pupil support assistants, were undertaken. The program was delivered as planned. The yoga instructor, parents, and pupil support assistants found the program to be beneficial to the students and a feasible part of their school week. There were no significant differences pre- to postintervention in any scores of the Strengths and Difficulties Questionnaire or Behavior Rating Inventory of Executive Function. Some positive changes in mood were found, although effect sizes were small. This study demonstrates the feasibility of delivering a school-based yoga program for children with additional support needs, as well as a feasible evaluation approach. The overall experiences for pupils, pupil support assistants, and the yoga teacher were positive and suggest that wider implementation and evaluation of the school-based yoga program would be of value.

Which self-reported measures are useful to explore diabetes support needs among adults with diabetes and severe mental illness?

OBJECTIVES: To construct and test patient-reported outcome measures (PROMs) for identifying diabetes support needs of adults with co-existing diabetes and severe mental illness (SMI) provided by mental health professionals at psychiatric outpatient clinics. METHODS: Design thinking was used to identify, select, and modify PROMs in collaboration with 18 adults with type 1 or type 2 diabetes and SMI and 10 healthcare experts. The PROMs were then tested with 86 adults with diabetes and SMI recruited from eight psychiatric outpatient clinics in Denmark. Data were analysed using systematic text condensation (questionnaire construction) and descriptive statistics (testing). RESULTS: Four principles for PROMs were identified: (a) be modified to be relevant for the target group, (b) be concise and simple to complete, (c) have a clear and unambiguous wording, and (d) be designed to measure topics that are perceived as meaningful. Test of the questionnaire contained 49 items in four domains. Missing response rates in the test were 1.2-4.7% in three domains and 4.7-11.6% in a domain addressing potential sources of diabetes support. DISCUSSION: PROMs can successfully be constructed in collaboration with this vulnerable population that yield low rates of missing responses.

Sexual exploitation of young men: Background characteristics and needs from a life-course perspective.

BACKGROUND: Sexually exploited young men are prevalent, yet underrepresented in clinical practice, policy and research. There are multiple barriers that often prevent young men to disclose and to seek or receive support, such as gender norms, limited awareness of victimization and feelings of guilt and shame. OBJECTIVE: By gaining more insight into the background characteristics of young men who experienced sexual exploitation and their needs, this study aims to raise awareness and to better inform policymakers, care- and educational professionals on adequate prevention and intervention efforts. METHODS: Twenty-six young men (age 14-32) who experienced sexual exploitation or other forms of sexual violence in their youth or were at high-risk, participated in this qualitative study that was conducted in The Netherlands. By means of semi-structured interviews and case-file analyses, data was collected to identify risk and protective factors in their life-course and support needs. RESULTS: Several vulnerabilities (e.g. previous experiences of abuse and neglect, household dysfunction, social rejection, running away, substance use) and a lack of positive and supportive relationships led young men into high-risk situations. Among these were involvement in pay dates, criminality and having to survive from day to day, which contributed to victimization. Prevailing gender norms and experiences of stigmatization were often a barrier to express vulnerabilities and to disclose victimization. There was a wide variety in support needs, including peer-to-peer support, therapy, support with day-to-day practices and anonymous support. CONCLUSIONS: These results will contribute to adequate prevention and trauma-informed intervention strategies that meet the unique needs of young men at risk for, or victim of sexual exploitation.

Exploring the support needs of Australian parents of young children with Usher syndrome: a qualitative thematic analysis.

BACKGROUND: Advancements in genetic testing have led to Usher syndrome now being diagnosed at a much earlier age than in the past, enabling the provision of early intervention and support to children and families. Despite these developments, anecdotal reports suggest there are substantial gaps in the services and supports provided to parents of children with Usher syndrome. The current study investigated the support needs of parents of children with Usher syndrome Type 1 when their child was aged 0 to 5 years. METHOD: Purposive sampling was used, and six semi-structured interviews were conducted with Australian parents of children with Usher syndrome, Type 1. Data was analysed using modified reflexive thematic analysis. RESULTS: Four key themes were identified as being central to the support needs of parents of children with Usher syndrome aged 0 to 5 years. (1) Social Needs referred to parents' need for various sources of social support, (2) Informational Needs described the lack of information parents received regarding Usher syndrome from treating professionals, (3) Practical Needs included supports needed to assist parents in managing the day-to-day tasks of caring for a child with a disability, and (4) Emotional Needs represented the emotional support (both formal and informal) that parents needed to be a positive support to their child. CONCLUSIONS: Findings provide rich information for relevant support groups, policy makers, individual healthcare professionals, and professional governing bodies regarding the education of stakeholders and the development and implementation of best-practice treatment guidelines.

Understanding the Support Needs and Challenges Faced by Family Caregivers in the Care of Their Older Adults at Home. A Qualitative Study.

Background: As the global population ages, the demand for family caregivers is expected to increase, underscoring the necessity to comprehend their support needs and challenges they face. However, caregiving often comes with various challenges and support needs that require attention. This study was aimed to gain an in-depth understanding of the support needs and challenges faced by family caregivers who provide care to their elderly loved ones at home. Methods: The study was conducted in Mekelle City, Ethiopia from December 2022 to October 2023 using a phenomenology study design and purposive sampling technique. A total of twenty-two in-depth interviews were conducted using an open-ended guide. The interviews were transcribed verbatim, entered into ATLAS.ti8 software, translated, and analyzed using a thematic analysis. Results: The study found that family caregivers face communication, financial, medication management, and transportation challenges in caring for elderly relatives at home. It also highlighted several key support needs of family caregivers in the care of elderly relatives at home. These includes financial assistance, training, access to information, and support from healthcare professionals. Limitations: Qualitative research, by its nature, is subjective as it relies on the perceptions and interpretations of the participants. Moreover, in qualitative studies, researchers typically work with a limited number of participants, in qualitative studies, researchers typically work with a limited number of participants, resulting in conclusions that may not reflect the experiences of all family caregivers. Conclusion: This qualitative study underscored the multitude of challenges faced by family caregivers in their role as primary caregivers for elderly relatives. The research also highlighted the pressing need for support systems that would address the physical, emotional, financial, and informational needs of these caregivers.