Primary Carers Research Articles

318 CARER STRESS REVIEW IN COMPLEX CASES REQUIRING INTERVENTION BY A COMMUNITY-BASED OLDER PERSONS TEAM

Abstract Background Complex cases of older adults suffering from multimorbidity are continuing to increase in number. The integrated care team, overseen by a consultant geriatrician, aims to facilitate the management of stable complex cases in the community. Patient care is largely affected by their support system at home; therefore, it is of great importance to ensure that the patient’s primary carer is receiving the support they require to facilitate the older patients’ management in the community. Our aim is to assess carer stress levels before and after Multi-Disciplinary Team (MDT) integrated care intervention. Methods Study Population were carers of patients identified as complex cases by the integrated care team. Caregiver stress index was administered during the initial assessment and on the closing of active cases. The maximum score on this index is 13 with high stress classified as >7. Scores were added to a spreadsheet. This spreadsheet was reviewed, and relevant data was collated. One year assessed March 2021- March 2022. Results Carer stress information was collected on 62 of 112 identified complex cases (55%). Of these 55 of 96 individual patients were represented (57%). Average age 82 years old. 65% female and 35%, male. Range of carer stress scores observed 0- to 12. Of the 62 cases, 85% (53 cases) had a reduction in carer stress post-intervention(p<0.01). Of these 65% had a reduction below 7 (p<0.01). Mean score improvement 7. No carer stress indices disimproved post-treatment. Conclusion Multidisciplinary, patient-centred community care has a clear positive impact on the patient carer. Improvements in carer stress scores could be further evaluated as to the benefits of specific interventions in time. In future, a more large-scale collection and interpretation of data would need to occur for a more conclusive positive impact of the community based integrated care team to be confirmed.

Health insurance status of cross-border migrant children and the associated factors: a study in a Thai-Myanmar border area

BackgroundAlthough policies of Thailand for migrant health protection are inclusive for all migrant groups, due to existing constraints in practices and policy implementation, many migrant children still lack the protection. This study aimed to assess the health insurance status of children aged 0-14 whose parents were cross-border migrant workers in Thailand, and factors related to the status.MethodsA Thai-Myanmar border area, being developed as a ‘special economic zone’ by the Thai government, was selected as a study site. With a cross-sectional research design, the study collected primary data in late 2018 by a structured questionnaire from 402 migrant households that contained 803 children. The logistic generalized estimating equation (GEE) technique was applied to examine factors associated with the children’s health insurance status. These included socio-economic factors, migration factors, and health insurance-related factors.ResultsIt is found that 83.2% of the migrant children did not have health insurance. Factors associated with the health insurance status included age 12-14 years (Odds ratio (OR) 2.34; 95% confidence interval (CI) 1.23-4.46), having a birth certificate (OR 1.89, 95% CI 1.04-3.45), and plan of the family in the future to remain the child in Thailand (OR 2.37, 95% CI 1.09-5.17). The primary carer’s factors that were important health insurance-related factors included having no legal work permit (OR 4.12, 95% CI 1.88-9.06), having health insurance (OR 8.51, 95% CI 3.93-18.41), little or no ability to communicate in Thai (OR 0.31, 95% CI 0.14-0.66), and understanding the right of migrant children to purchase health insurance (OR 2.57, 95% CI 1.52-4.34).ConclusionsThe findings point to the need for every migrant child to have a birth certificate, diminishing language barriers, and providing education and motivation about the need for health insurance for migrants and their accompanying dependents, especially children. For further studies, it is suggested to include migrant health insurance supply-side factors with qualitative analyses to understand how all the factors interactively determine the health insurance status of migrant children.

The lived experience of carers who assist people with disability in Ernakulam, Kerala, India

Purpose Family members are preferred providers of care for people with disability in India. Despite this, research which evaluates the impact of caregiving is limited. This qualitative study provides a comprehensive, in-depth exploration of the lived experience of carers who provide assistance to persons with a disability in Southwest India. Methods In this qualitative study, 20 carers who assist persons with disability were purposively selected to undertake semi-structured interviews across a variety of domains. Data analysis was informed by Attride-Stirling’s thematic network analysis. Results Five global themes were identified which included; carers commitment to caring; concurrent demands of caregiving; mental and physical health of carers; networks and sources of non-financial support; and finances – strains and supports. Conclusions This study provides an in-depth exploration of the lived experience of carers in Kerala, India which will inform the future development of interventions to assist primary carers. Implications for rehabilitation Family members are preferred providers of care for people with disability in India. By understanding the issues that affect carers who assist people with disability, it is possible to develop more effective, targeted, and sustainable interventions, that meet the needs of carers and alleviate some of their burden. Improving the health and wellbeing of carers needs to be urgently addressed in order to improve outcomes for those with disability – whom they care for.

Professionalisation and the spectacle of nature: Understanding changes in the visual imaginaries of private protected area organisations in Australia

Imaginaries of protected areas as state-based fortresses have been challenged by expansion of the global nature conservation estate on non-government lands, notably in contexts such as Australia where neoliberal reform has been strong. Little is known about the implications of this change for the meanings, purposes and practices of nature conservation. Images are central to public understandings of nature conservation. We thus investigate the visual communication of environmental non-government organisations (ENGOs) involved in private protected areas in Australia, with particular focus on Bush Heritage Australia (BHA). We employ a three-part design encompassing quantitative and qualitative methods to study the visual imaginaries underlying nature conservation in BHA's magazines and the web homepages of it and four other ENGOs over 2004–2020. We find that visual imaginaries changed across time, as ENGOs went through an organisational process of professionalisation comprising three dynamics: legitimising, marketising, and differentiating. An imaginary of dedicated Western volunteer groups protecting scenic wilderness was replaced by the spectacle of uplifting and intimate individual encounters with native nature. Amenable to working within rather than transforming dominant political-economic structures, the new imaginary empowers professional ENGOs and their partners as primary carers of nature. It advertises a mediated access to spectacular nature that promises positive emotions and redemption for environmental wrongs to financial supporters of ENGOs. These findings reveal the role of non-government actors under neoliberal conditions in the use of visual representations to shift the meanings, purposes and practices of nature conservation.

Education/Training Interventions to Improve Oral Health of Adults with Intellectual Disability.

People with intellectual disability have poorer oral health outcomes and experience greater difficulties accessing dental services than the rest of the community. Interdisciplinary educational programs for those involved in oral health decision making for people with intellectual disability aim to improve their oral health. This scoping review explored education/training interventions related to the oral health of adults with intellectual disability. Interventions targeted dental health and non-dental health professionals, adults with intellectual disability, and their paid and unpaid supporters. Six electronic databases were searched using PRISMA guidelines and the Crowes critical appraisal tool. The search strategy, plus the application of the inclusion and exclusion criteria, presented in the body of the manuscript, led to the selection of 20 papers for inclusion into this review. The quality of undergraduate tuition relating to disability was reported to be poor, but students and dental health professionals expressed interest in expanding their knowledge in this area. Disability-support workers and primary carers of people with intellectual disability reported improved knowledge and attitude, but the oral health status of the people they supported was not impacted. No research was found that explored the perspectives of non-dental health professionals. Oral health training/education contributes to systemic barriers in general health, wellbeing, and social inclusion of people with intellectual disability. Revision of disability-related programs in general dentistry courses and longitudinal impact research is needed.

Cost-effectiveness analysis of silver diamine fluoride to divert dental general anaesthesia compared to standard care.

The aim is to perform a model-based cost-effectiveness analysis of a silver diamine fluoride (SDF) protocol intervention to divert dental general anaesthesia (DGA) among Victorian children aged 2-10 years. Data inputs were based on an Australian single-cohort 2017/18 study. Intervention costs for standard care were derived from two subgroups of children: (1) children who received standard care without DGA, and (2) children who received standard care with DGA. Two scenarios were modelled due to limited post-follow-up data: (1) children receiving SDF had standard care without DGA (base-case scenario), and (2) children receiving SDF did not receive standard care without DGA (alternative scenario). A simple decision-tree model with probabilistic sensitivity analysis (PSA) estimated the incremental costs per diverted DGA. The probability of children requiring specialist referral and offered SDF, but the primary carer opted for DGA is 0.124 (SD 0.034), and the probability of children requiring DGA in standard care is 0.346 (SD 0.036). For both the base-case and alternative scenario, the incremental cost-effectiveness ratio outcome is dominant and their cost-effectiveness being either 74.8% or 100% respectively. The SDF protocol intervention is cost-effective dental caries management option for young children where referral for DGA is considered. © 2022 Australian Dental Association.

Short Report: Outcomes for siblings associated with sub-groups of autistic children with intellectual disability identified by latent profile analysis

BackgroundRecent research suggests that having a brother or sister with autism may contribute to increased positive or negative emotional or psychological impact on siblings. AimsTo use a novel multidimensional data analysis method to further understand outcomes for siblings of autistic children. Methods and Procedures318 siblings of children with a recorded autism diagnosis and an intellectual disability were included for latent profile analysis. Five variables (DBC disruptive and anxiety; VABS II communication, daily living, and socialization skills) were used to identify sub-groups of autistic children. Primary carers reported on sibling relationship quality (items from the Sibling Relationship Questionnaire warmth/closeness and conflict scales), and siblings’ behavioral and emotional problems. Outcomes and resultsThe profile groups differed in their levels of ID coupled with disruptive behavior, emotional problems and adaptive skills. Profiles included a severe ID, low behavior and emotional problems and low adaptive skills group; a group with mild ID coupled with high adaptive skills and low emotional and behavioral problems; and a mild ID group with high emotional and behavioral problems. Conflict in the sibling relationship differed across the profile groups (F (4304) = 15.13, p < .001). Conclusions and implicationsSiblings of autistic children with the highest support needs were reported to have the lowest conflict in their relationships. Conversely, siblings of the autistic children with the highest levels of externalizing behaviors and anxiety were reported to have the highest levels of conflict in the sibling relationship.

Qualitative Focus Groups with Professionals of Special Education and Parents of Young Females with Intellectual Disability Exploring Experiences with Menstrual Hygiene Management and the Trigger for the Non-Therapeutic Hysterectomy in Mexico.

How primary carers, physicians, health education professionals, and others see or understand the subject of menstruation in women with intellectual disability (ID) is rooted in the socio-cultural context and in the socio-economic structures in which all of them live. The aim of this study was to explore how parents of young females with ID and special education professionals perceive and experience menstrual hygiene management, which coping strategies are applied; and what triggers the performance of a hysterectomy. A qualitative focus group study design was conducted with 69 parents and 11 special education professionals, in 14 schools and one Down syndrome clinic, in Mexico City. Data were analysed using the method of thematic analysis. The main concern of parents was how to cope with the underlying disease. They perceived menstrual bleeding positively. Their psychological distress had to do with the reproductive health of their daughters, with their wish to avoid pregnancy, and with their fear of death and leaving their daughters alone and helpless without them. None of them favoured hysterectomy. Medical indication of hysterectomy was identified as the trigger for its performance. There is an urgent need of policy development/review on best practices for hysterectomy in the females in question.

Psychological distress in sons as resident carers of older mothers in Japan

AbstractIn Japan, care-giving sons are noted for their high rates of abuse of care recipients. This study revealed, for the first time, the difficulties unique to sons caring for their mothers. All sons used long-term care insurance services. However, they provided care that could not be covered by such public services while harbouring psychological distress. In this study, we interviewed 13 sons living with their older mothers as the primary carer and conducted a thematic analysis focusing on their psychological distress. As part of our study findings, we have identified nine themes during analysis: uncomfortable feelings that cannot be mitigated as a son; feeling of futility in being unrecognised as a carer; fear of losing something important; a strong sense of responsibility for one's mother's life; disappointment in being unable to obtain understanding and co-operation from one's siblings in providing care; irritation and anger towards one's wayward mother; guilt about treatment of one's mother; sense of exhaustion due to demanding care; and experiencing hopelessness and despair. Thus, it is important to understand what psychological distress carers experience and to consider possible approaches for their support. The study findings provide suggestions for long-term care support in regions, such as East Asia, where the numbers of son carers are increasing inevitably owing to declining birth rates and ageing population, as in Japan.

Differences in the predictors of the resilience between carers of people with young- and late-onset dementia: a comparative study.

The aim of this study was to compare the resilience of carers in YOD and LOD and to examine which factors might be associated with resilience in both groups of carers. The study was conducted with 120 people with dementia (49 YOD) and their primary carers. The carers had their resilience, quality of life, depressive symptoms, and burden assessed and answered the sociodemographic questionnaire. We assessed care recipients' global cognition, dementia severity, social cognition, facial expression recognition, awareness of disease, the ability to perform activities of daily living, depressive symptoms, and neuropsychiatric symptoms. For data analysis, unpaired two-tailed Student's t-test and linear regressions were conducted. Resilience did not differ between groups (p=0.865). Resilience was inversely related to carers' depressive symptoms in both YOD (p=0.028) and LOD (p=0.005) groups. The carers' schooling (p=0.005), duration of disease (p=0.019), and depressive symptoms of care recipient (p<0.001) were related to carers' resilience only in LOD group. The context of care, clinical status of the care recipient, and mental health resources affected the carers' resilience in the LOD group. Conversely, resilience seems to be affected only by carers' mental health in the YOD group. The understanding of these differences is crucial for the developing of intervention strategies.

Characteristics of children attending an autism specific early learning and care setting prior to and following introduction of the National Disability Insurance Scheme

ABSTRACT Background The rollout of the National Disability Insurance Scheme (NDIS) has transformed the Australian funding landscape for individuals with disability and their families. This study examined whether the profiles of autistic children and their families accessing an early intervention (EI) setting have changed following its introduction. Methods The cognition and behavioural profiles of children funded under the NDIS (n = 58) were compared to children who had received block government funding (n = 58). Parental mental health and quality of life (QoL) outcomes were compared. Results Children presented with similar baseline cognition, functional abilities and autism behaviours at intake into EI irrespective of funding type. While parental QoL was similar across groups, parents funded by the NDIS reported significantly higher stress and depression levels. Conclusions The current findings suggest that modifications to the NDIS framework may be necessary to extend benefits beyond the individual living with disability to foster the health and wellbeing of their primary carers.

The distribution of ‘educational labour’ in families with equal or primary carer fathers

Parental involvement in education has taken on a new importance in contemporary society as a result of the rise of ideas associated with ‘parental determinism’, the desire of neoliberal states to shift responsibility for educational outcomes onto families, and the increasing salience of educational qualifications in processes of social ­reproduction. Nevertheless, extant research has indicated that such responsibilities typically fall on mothers rather than fathers. Drawing on a two-wave study, this article explores the experiences of UK families in which fathers had taken on at least equal responsibility for the care of their young children, focussing specifically on whether the ‘labour’ associated with education was also distributed more equally. It shows that education was a notable area in which inequalities continued to be played out – because of assumptions about maternal responsibility, but also the active role performed by schools and parent groups in reinforcing traditional gender roles.

The juncture and disjuncture of service delivery systems in post-parental care planning for rural people with intellectual disabilities

ABSTRACT Background Australian research indicates that post-parental care transitions are rarely planned and primarily occur following a crisis for a primary carer. This paper examines disability staff perceptions of transitions for people with intellectual disability and their ageing carers in rural South Australia. Method A focus group interview model was used, with a semi-structured interview guide initiating group discussions. A thematic analysis methodological approach was selected to analyse the data. Results This paper reports on the theme of Service Delivery, which has three sub-themes of Availability; Distance; and Individual Access. The key findings are presented and supported by the use of exemplar quotes. Conclusions This research indicates a poor intersection of general and specialist services is inhibiting post-parental transitional care for rural people. Simply allocating money to the individual does not resolve the issues, and the interface between different services needs to be better considered at government level.

Depressive Symptoms Among Adolescents in Bangladesh

Adolescent mental well-being hardly took precedence in Bangladesh, which is reflected in both policies and literature. This study assessed the common symptoms of depression among school-going adolescents (aged 10–19 years) in Bangladesh. Primary data were collected during October–November 2019 from 289 participants in four schools using a questionnaire based on the WHO global school-based student health survey and WHO stepwise approach to NCD (Tools version 9.5). Sadness (45.3%) and aggression (40.5%) were the most common depressive symptoms found in the study, followed by confusion (27.7%), worthlessness (21.8%), fatigue (21.5%), and insomnia (18.0%). The sex of the student, grade of study, and duration of daily sleep showed differential associations with these symptoms. These findings indicate a crucial stage of adolescence, where the different societal pressures often ignored by primary carers, could have detrimental effect on children. There is an urgent need to address the growing adolescent mental health issue in Bangladesh and a need for health system to recognize its precedence.

Constructions of Families in the Legal Regulation of Care

This article considers the extent to which constructions of care within law and policy continue to privilege the heterosexual family model of care giving i.e., two parents cohabiting in a monogamous, long-standing relationship acting as one economic unit with joint children with one primary wage earner and one primary carer. Taking its focal point in the legal frameworks that surround parental leave, it explores the manner in which ‘non-traditional’ family forms are conceived in legal frameworks surrounding care, using recent changes to Danish parental leave policies as a case study.

Information seeking amongst informal caregivers of people with dementia: a qualitative study

PurposeThis paper both supports previous findings relating to, and presents new insights into: the information needs and the information seeking processes of a sample of informal caregivers of people with dementia (in relation to their own needs and the interrelated needs of the people they are caring for); the extent to which such information needs are and are not being met; and the factors facilitating and hindering access to the right information.Design/methodology/approachThe study adopted a qualitative approach in the form of a thematic analysis of in-depth, semi-structured interviews with a sample of 20 informal caregivers from a range of different age groups, genders and caring roles.FindingsThematic analysis identified significant informational challenges, with a common perception that information seeking was onerous, requiring a proactive approach. Further challenges arose from a perceived lack of focus on carer needs coming up against the boundaries of professional knowledge and inconsistent information provision across the sample. Distance carers faced specific issues. A second theme of negative impacts described burdens arising from: difficulties in accessing information from a complex array of support services closure or change in services and unfulfilled information needs. Participants employed strategies to enable access to information, for example, being open about their caring role; and building formal or informal support networks. It is important to address emotional as well as cognitive dimensions of information needs.Practical implicationsThis research highlights a need for health and social care, practice and policy to acknowledge and address information needs of this diverse population and build resilience. Above all, information seeking and sharing must be understood within the context of the emotional impact of caring, and recognition of these twin needs is crucial.Originality/valueWhilst previous research has focussed on identifying specific needs and knowledge acquisition at cross-sections, a more holistic understanding of experiences is underexplored. This approach is needed to take into account broader contexts, diversity of experiences and different caring roles, e.g. primary and secondary carers, and in situ and distance carers.

Family carers' expectations regarding dementia care services and support in China: A qualitative study.

In China, approximately 85% of people with dementia are cared for by family carers. However, limited research has been conducted to examine family carers' expectations regarding what they perceive is required for optimal care. Therefore, this study aimed to explore family carers' expectations regarding dementia care support and services in China. A qualitative study employing semi-structured interviews, with data collected from three public tertiary hospitals where the primary family carers of people with dementia (N = 21) were recruited from May to December 2019. Purposive maximum variation sampling was used to recruit participants. Data was interpreted both inductively and deductively using thematic analysis. Four themes were identified. The family carers reported minimal support regarding dementia care, and they held little hope of receiving support. However, most carers expressed their limited expectations, such as financial support from the government and respite care services from the community. Carers believed that care was their duty, and some of them were unwilling to move their relative with dementia into a nursing home. Health and the three-tier long-term care systems in China are inadequately prepared for the challenges of dementia care, suggesting the need to develop health and social services and improve support for family carers to enable improved care for people with dementia.

Untangling the gender pay gap in radiation oncology.

Untangling the gender pay gap in radiation oncology.

Work, care and creativity in a time of COVID-19: creatively mapping presence bleed in the home

ABSTRACT The pandemic restrictions and lockdowns have seen working from home (WFH) becoming a mundane practice. During the lockdowns, all movement were situated in the rhythms of the domestic and its infinite regresses of 'presence bleed' (Gregg [2011]. Work’s Intimacy. London: Polity.) – informal care of older parents and young children, the gendered nature of care work and its often invisible role as it convergences with uneven expectations around working from home (WFH) and home schooling. In June 2020 we developed an open call for responses to the Work, Care and Creativity Study (WCCS). The study sought to explore the lived experiences of primary carers who are also creative professionals working and caring from home (WCFH) during the COVID-19 pandemic. Deploying creative practice techniques which use prompts (such as photos, drawing and creative writing responses) to elicit participant’s experiences and emotions, this study sought to render visible some of the overlooked experiences, perceptions and practices emerging over the pandemic.

Analysing the impact of being a sole or primary carer for dependent relatives on the sentencing of women in the Crown Court, England and Wales

Analysing the impact of being a sole or primary carer for dependent relatives on the sentencing of women in the Crown Court, England and Wales