Search results for: family carers
Commenced in January 2007
Frequency: Monthly
Edition: International
Paper Count: 3050

Search results for: family carers

3050 Prevalence and Correlates of Anxiety and Depression among Family Carers of Cancer

Authors: Godfrey Katende, Lillian Nakimera

Abstract:

The process of caregiving may cause emotional distress in form of anxiety and depression among family carers of cancer patients. Little is known about the prevalence anxiety and depression among family carers of cancer patients in Uganda. This cross-sectional study aimed to determine the prevalence of anxiety and depression among family carers of cancer patients and related factors associated with abnormal levels of anxiety and depression. A total of 119 family carers from Uganda Cancer Institute (UCI) were assessed by the Hospital Anxiety and Depression Scale (HADS) standardized questionnaire. The prevalence of anxiety and depression among family carers was high (45% and 26 % respectively); (2) abnormal levels of anxiety (ALA) and depression (ALD) was significantly associated with being a relative carer. Incorporating evidence based psychological therapies targeting family carers into usual care of cancer patients is imperative.

Keywords: anxiety, cancer, carer, cross-sectional design, depression, Uganda

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3049 Young Carers’ Dilemma: Family Responsibility, Bonding and Commitment to Supporting Their Mentally Ill Parent in Taiwan

Authors: Esabella Yuan

Abstract:

This study explored the recollections of young carers who lived with and cared for their mentally ill parent and how they managed life difficulties in Taiwan. 19 former young carers took part in the study, conducted from July to October 2021. The findings provided the unique view that all the participants acknowledged being taught by the mainstream culture to honour family value and prioritize the needs of parents over their own ones, they stepped in to care for the ill parent out of love and out of necessity through there having no-one to turn to, they were willing to assume long-term caring responsibilities, strikingly, a much more common experience was that the participants hided parental illness and young carer identity in the community through the fear of social discrimination attached to mental illness. As a result, these former young carers stayed in hidden circumstances and coped alone with caring challenges. The findings suggest that there needs multi-disciplinary services working together to recognize the needs of young carers and provide appropriate intervention to young carers based on a family-focus approach and ensure to serve the best interests of young carers and their families. It is to be hope that young carers can grow up safely and healthily within the community.

Keywords: young carers, family well-being, mental health, parental mental illness

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3048 Acceptability of the Carers-ID Intervention for Family Carers of People with Intellectual Disabilities

Authors: Mark Linden, Michael Brown, Lynne Marsh, Maria Truesdale, Stuart Todd, Nathan Hughes, Trisha Forbes, Rachel Leonard

Abstract:

Background: Family carers of people with intellectual disabilities (ID) face ongoing challenges in accessing services and often experience poor mental health. Online support programmes may prove effective in addressing the mental health and well-being needs of family carers. This study sought to test the acceptability of a newly developed online support programme for carers of people with intellectual disabilities called Carers-ID. Methods A sequential mixed-methods explanatory design was utilised. An adapted version of the Acceptability of Health Apps among Adolescents (AHAA) Scale was distributed to family carers who had viewed the Carers-ID.com intervention. Following this, participants were invited to take part in an online interview. Interview questions focused on participants’ experiences of using the programme and its acceptability. Qualitative and quantitative data were analysed separately and then brought together through the triangulation protocol developed by Farmer et al (2006). Findings: Seventy family carers responded to the acceptability survey, whilst 10 took part in interviews. Six themes were generated from interviews with family carers. Based on our triangulation, four areas of convergence were identified, these included, programme usability and ease, attitudes towards the programme, perceptions of effectiveness, and programme relatability. Conclusions: In order to be acceptable, online interventions for carers of people with ID need to be accessible, understandable and easy to use, as carers time is precious. Further research is needed to investigate the effectiveness of online interventions for family carers, specifically considering which carers the intervention works for, and for whom it may not.

Keywords: intellectual disability, family carer, acceptability study, online intervention

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3047 Experiences of Family Carers of People Intellectual Disabilities During the COVID-19 Pandemic

Authors: Mark Linden, Michael Brown, Lynne Marsh, Maria Truesdale, Stuart Todd, Nathan Hughes, Trisha Forbes, Rachel Leonard

Abstract:

Background: The COVID-19 pandemic exacerbated the already significant strain placed on family carers of people with profound and multiple intellectual disabilities (PMID), given the withdrawal of many services during lockdown. The aim of this study was to explore the experiences of family carers of people with PMID during the COVID-19 pandemic. Methods: Online focus groups were conducted with family carers (n=126) from across the UK and the Republic of Ireland. Participants were asked about their experiences of the COVID-19 pandemic, coping strategies, and challenges faced. Focus groups were audio recorded, transcribed verbatim and analyzed through thematic analysis. Findings: Three themes emerged from our analysis of the data: (i) COVID-19 as a double-edged sword, (ii) The struggle for support (iii) the Constant nature of caring. These included 11 subthemes: (i) ‘COVID-19 as a catalyst for change’, ‘Challenges during COVID-19: dealing with change’, ‘Challenges during COVID-19: fear of COVID-19’, ‘The online environment: the new normal’ (ii) ‘Invisibility of male carers’, ‘Carers supporting carers’, ‘The only service you get is lip service: non-existent services’, ‘Knowing your rights’ (iii) ‘Emotional response to the caring role: Feeling devalued’, ‘Emotional response to the caring role: Desperation of caring’, ‘Multiple demands of the caring role.’ Conclusions: Poor or inconsistent access to services and support has been an ongoing difficulty for many family carers. The COVID-19 pandemic has only further intensified these difficulties, increasing family carers' stress. There is an urgent need to design services, such as online support programs, in partnership with family carers that adequately address their needs.

Keywords: intellectual disabilities, family carer, COVID-19, disability

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3046 Perspectives of charitable organisations on the impact of the COVID-19 pandemic on family carers of people with profound and multiple intellectual disabilities.

Authors: Mark Linden, Trisha Forbes, Michael Brown, Lynne Marsh, Maria Truesdale, Stuart Todd, Nathan Hughes

Abstract:

Background The COVID-19 pandemic resulted in a reduction of health care services for many family carers of people with profound and multiple intellectual disabilities (PMID). Due to lack of services, family carers turned to charities for support during the pandemic. We explored the views of charity workers across the UK and Ireland who supported family carers during the COVID-19 pandemic and explored their views on effective online support programmes for family carers. Methods This was a qualitative study using online focus groups with participants (n = 24) from five charities across the UK and Ireland. Questions focused on challenges, supports, coping and resources which helped during lockdown restrictions. Focus groups were audio recorded, transcribed verbatim, and analysed through thematic analysis. Findings Four themes were identified (i) ‘mental and emotional health’, (ii) ‘they who shout the loudest’ (fighting for services), (iii) ‘lack of trust in statutory services’ and (iv) ‘creating an online support programme’. Mental and emotional health emerged as the most prominent theme and included three subthemes named as ‘isolation’, ‘fear of COVID-19’ and ‘the exhaustion of caring’. Conclusions The withdrawal of many services during the COVID-19 pandemic further isolated and placed strain on family carers. Even after the end of the pandemic family cares continue to report on the struggle to receive adequate support. There is a critical need to design services, including online support programmes, in partnership with family carers which adequately address their needs.

Keywords: intellectual disability, family carers, COVID-19, charities

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3045 The Carers-ID Online Intervention For Family Carers Of People With Intellectual Disabilities: A Feasibility Trial Protocol

Authors: Mark Linden, Rachel Leonard, Trisha Forbes, Michael Brown, Lynne Marsh, Stuart Todd, Nathan Hughes, Maria Truesdale

Abstract:

Background: Current interventions which aim to improve the mental health of family carers are often face to face, which can create barriers to full participation. Online interventions can offer flexibility in delivery compared to face to face approaches. The primary objective of this study is to determine the feasibility of delivering the Carers-ID online intervention, while the secondary outcome is to improve the mental health of family carers of people with intellectual disabilities. Methods: Family carers (n = 120) will be randomised to receive the intervention (n=60) or assigned to a wait-list control (n=60) group. The intervention (www.Carers-ID.com) consists of fourteen modules which cover topics including promoting resilience, providing peer support, reducing anxiety, managing stress, accessing local supports, managing family conflict and information for siblings who are carers. Primary outcomes for this study include acceptability and feasibility of the outcome measures, recruitment, participation and retention rates and effect sizes. Secondary outcomes will be completed at three time points (baseline, following intervention completion and three months after completion). Secondary outcomes include, depression, anxiety, stress, well-being , resilience and social connectedness. Participants (n=12) who have taken part in the intervention arm of the research will be invited to participate in semi-structured interviews as part of the process evaluation. Discussion: To determine whether a full-scale randomised controlled effectiveness trial is warranted, feasibility testing of the intervention and trial procedures is a necessary first step. The Carers-ID intervention provides an accessible resource for family carers to support their mental health and well-being.

Keywords: intellectual disability, family carer, feasibility trial, online intervention

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3044 Family Carers' Experiences in Striving for Medical Care and Finding Their Solutions for Family Members with Mental Illnesses

Authors: Yu-Yu Wang, Shih-Hua Hsieh, Ru-Shian Hsieh

Abstract:

Wishes and choices being respected, and the right to be supported rather than coerced, have been internationally recognized as the human rights of persons with mental illness. In Taiwan, ‘coerced hospitalization’ has become difficult since the revision of the mental health legislation in 2007. Despite trend towards human rights, the real problem families face when their family members are in mental health crisis is the lack of alternative services. This study aims to explore: 1) When is hospitalization seen as the only solution by family members? 2) What are the barriers for arranging hospitalization, and how are they managed? 3) What have family carers learned, in their experiences of caring for their family members with mental illness? To answer these questions, qualitative approach was adopted, and focus group interviews were taken to collect data. This study includes 24 family carers. The main findings of this research include: First, hospital is the last resort for carers in helplessness. Family carers tend to do everything they could to provide care at home for their family members with mental illness. Carers seek hospitalization only when a patient’s behavior is too violent, weird, and/or abnormal, and beyond their ability to manage. Hospitalization, nevertheless, is never an easy choice. Obstacles emanate from the attitudes of the medical doctors, the restricted areas of ambulance service, and insufficient information from the carers’ part. On the other hand, with some professionals’ proactive assistance, access to medical care while in crisis becomes possible. Some family carers obtained help from the medical doctor, nurse, therapist and social workers. Some experienced good help from policemen, taxi drivers, and security guards at the hospital. The difficulty in accessing medical care prompts carers to work harder on assisting their family members with mental illness to stay in stable states. Carers found different ways of helping the ‘person’ to get along with the ‘illness’ and have better quality of life. Taking back ‘the right to control’ in utilizing medication, from passiveness to negotiating with medical doctors and seeking alternative therapies, are seen in many carers’ efforts. Besides, trying to maintain regular activities in daily life and play normal family roles are also experienced as important. Furthermore, talking with the patient as a person is also important. The authors conclude that in order to protect the human rights of persons with mental illness, it is crucial to make the medical care system more flexible and to make the services more humane: sufficient information should be provided and communicated, and efforts should be made to maintain the person’s social roles and to support the family.

Keywords: family carers, independent living, mental health crisis, persons with mental illness

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3043 Caring for the Carers: A Qualitative Study to Evaluate the Perspective of Mental Health Carers on the Effectiveness of Community Services in the Illawarra Region (NSW)

Authors: Mona Nikidehaghani, Freda Hui

Abstract:

In Australia, one-third of mental health carers provide 40 hours or more of unpaid care per week. These hidden workers contribute significantly to the Australian mental health workforce by providing unpaid services both direct and indirect to people in their care. However, carers are often neglected in the healthcare system because Government services focus on those with a mental health condition rather than those supporting them. The aim of this study is to evaluate the perceptions of mental health carers on the effectiveness of community services designed for carers and how these services could be improved. We collaborated with One Door Mental Health, a community organisation that supports mental health carers. Through semi-structured interviews with 27 mental health carers residing in the Illawarra region (NSW), we documented their daily challenges and evaluated outcomes of the current programs for carers. Our findings demonstrate that services such as education programs enable capacity building and improve the social life and mental health of carers. Drawing on the perceptions of mental health carers, this study maps pathways for making meaningful changes in the lives of carers and proposes an outcome framework to evaluate the impact of a community organisation on the lives of their clients. The framework prepared by this project would be replicable, allowing other community organisations to measure the outcomes and improve their services.

Keywords: capacity building, community development, community service, mental health carers

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3042 An Investigation into the Decision-Making Process of Choosing Long-Term Care Services in Taiwan

Authors: Yu-Ching Liu

Abstract:

Background: Family numbers usually take responsibility for taking care of their elderly relatives, especially parents. Caring for a patient with chronic diseases is a stressful experience, which makes carers suffer physical and mental health stress, difficulties maintaining family relationships and issues in participating in the labor market, which may lower their quality of life (QoL). The issue of providing care to relatives with chronic illness has been widely explored in Taiwan, but most studies focus on the need for full-time caregivers. Objective: The main goal of this study was to examine the topic of working carers involved in the decision-making process of LTC services and to explore what affects working carers considering when they choose the care services for their disabled, elderly relatives. Method: A total of 7 working caregivers were enrolled in this study. A face-to-face and semi-structured in-depth qualitative interview study were conducted to explore the caregivers' perspectives. Results: Working carers have a positive experience of using LTC service because it allows them to kill two birds with one stone, continue employment, and care for an elderly disabled relative. However, working carers have still been struggling to find friendly community-based LTC services. There were no longer available community services that could be used with the illness condition of patients getting worse. As such, patients have to be cared for at home, which might increase the caregiver burden of carers. Conclusion: Working family caregivers suffer from heavy physical and psychological burdens as they not only have to maintain their employment but care for elderly disabled relatives; however, the current support provided is insufficient. The design of services should consider working carers' employment situation and need rather than the only caring situation of patients at home.

Keywords: family caregiver, Long-term care, work-life balance, decision-making

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3041 The Needs of People with a Diagnosis of Dementia and Their Carers and Families

Authors: James Boag

Abstract:

The needs of people with a diagnosis of dementia and their carers and families are physical, psychosocial, and psychological and begin at the time of diagnosis. There is frequently a lack of emotional support and counselling. Care- giving support is required from the presentation of the first symptoms of dementia until death. Alzheimer's disease begins decades before the clinical symptoms begin to appear, and in many cases, it remains undiagnosed, or diagnosed too late for any possible interventions to have any effect. However, if an incorrect diagnosis is given, it may result in a person being treated, without effect, for a type of dementia they do not have and delaying the interventions they should have received. Being diagnosed with dementia can cause emotional distress to the person, and physical and emotional support is needed, which will become more important as the disease progresses. The severity of the patient's dementia and their symptoms has a bearing of the impact on the carer and the support needed. A lack of insight and /or a denial of the diagnosis, grief, reacting to anticipated future losses, and coping methods to maximise the disease outcome, are things that should be addressed. Because of the stigma, it is important for carers not to lose contact with family and others because social isolation leads to depression and burnout. The impact on a carer's well- being and quality of life can be influenced by the severity of the illness, its type of dementia, its symptoms, healthcare support, financial and social status, career, age, health, residential setting, and relationship to the patient. Carer burnout due to lack of support leads to people diagnosed with dementia being put into residential care prematurely. Often dementia is not recognised as a terminal illness, limiting the ability of the person diagnosed with dementia and their carers to work on advance care planning and getting access to palliative and other support. Many carers have been satisfied with the physical support they were given in their everyday life, however, it was agreed that there was an immense unmet need for psychosocial support, especially after diagnosis and approaching end of life. Providing continuity and coordination of care is important. Training is necessary for providers to understand that every case is different, and they should understand the complexities. Grief, the emotional response to loss, is suffered during the progression of the disease and long afterwards, and carers should continue to be supported after the death of the person they were caring for.

Keywords: dementia, caring, challenges, needs

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3040 Perception Towards Palliative Patients’ Healthcare Needs: A Survey of Patients and Carers

Authors: Che Zarrina Sa'ari, Sheriza Izwa Zainuddin, Hasimah Chik, Sharifah Basirah Syed Muhsin

Abstract:

Palliative care is holistic care for patients with serious illnesses and for the family as well by interdisciplinary specialties to optimize quality of life by preventing, treating, and comforting the suffering and struggling. Palliative care is not a curative treatment but a comprehensive care to ensure the well-being of patients. This study was to identify the perceptions of patients and carers on healthcare needs and any factors related to the needs of palliative patients. Validated questionnaires survey of 254 patients and carers were analysed using a Statistical Package for the Social Sciences (SPSS) version 22. The findings were processed with Cronbach Alpha analysis, frequency, and descriptive to compare the important of each element in healthcare. Open-ended responses were analysed using thematic framework approach. The findings proved that all the items in healthcare needs elements were important because the frequency shown higher values, which were physical needs (5.91), mental needs (6.10), spiritual needs (6.34), emotional needs (6.05), social needs (5.88) and logistics needs (5.05). The total score of Cronbach’s alpha (α) for this study is 0.958, which is suggesting very good internal consistency reliability for the elements for healthcare needs. Professionals and healthcare providers need to ensure healthcare planning is individualised by tailoring it to the values, priorities, and ethnic/cultural/religious context of each person.

Keywords: healthcare, need, holistic, palliative, multi speciality

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3039 The Sexuality of People with Physical Disabilities: A Qualitative Feminist Perspective of Carer's Points of View

Authors: Etsuko Sakairi

Abstract:

In 2016 Japan started to enforce domestic legislation in the form of the Act of Elimination of Discrimination against Persons with Disability, along with ratifying the United Nations Convention on the Rights of Persons with Disabilities (CRPD) in 2014. However, it is not clear what kind of situations would be considered cases of discrimination in relation to issues of sexuality according to this legislation. Furthermore, in March 2016, the United Nations Committee on the Elimination of Discrimination against Women (CEDAW) made a recommendation to the Japanese government to conduct a study of the forced sterilization of women under the Eugenic Protection Act. This research is carried out against this background in which the experiences of people with disabilities have often been restricted by caregivers and family members—as evidenced by the high number of eugenics surgeries performed on people with disabilities without their consent. This research contributes to this topic by presenting voices and perspectives of key people, especially focusing on the voices of carers who are working with people with physical disabilities in a Non-Western country, Japan. Furthermore, since 90% of the research on the topic of sexuality of people with disabilities is conducted in Western countries, the voices from Non-Western countries in this regard are greatly lacking. In the part of the research presented here, the researcher has employed a feminist disability theory to understand the circumstances surrounding people with physical disabilities. She has gathered voices from 58 carers by using an on-line questionnaire (55) and by conducting face-to-face interviews (3). In this presentation, the researcher will introduce experiences and thoughts regarding sexuality and people with disabilities by using carers’ own words. One of the major findings was carers’ concern about a boundary issue. Although each carer has had unique experiences depending on their professional or personal relationship with people with physical disabilities, many of them shared some similar viewpoints. This included a concern that assisting with the meeting of some forms of sexual needs 9e.g. assisted masturbation) would result in the possibility of transgressing the boundary between the carer and the person with physical disability. Most of the carer did not have any opportunity to receive any trainings regarding to sexuality of people with disabilities. Furthermore, most of the carers conceptualized that ‘Keeping a sexual dignity of people with disabilities’ means practicing a ‘Principle of same sex assistance’. The researcher hopes that this presentation provides an opportunity for audiences to look back at their own community and to think about what sexuality of people with physical disabilities means to their carers as well as to look back at their own practice in relation to this issue.

Keywords: Carer, Japan, physical disabilities, sexuality

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3038 Family Caregiver Transitions and Health in Old Age: A Longitudinal Perspective

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

Abstract:

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

Keywords: family caregiving, health, old age, transition

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3037 Exploring the Carer Gender Support Gap: Results from Freedom of Information Requests to Adult Social Services in England

Authors: Stephen Bahooshy

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Our understanding of gender inequality has advanced in recent years. Differences in pay and societal gendered behaviour expectations have been emphasized. It is acknowledged globally that gender shapes everyone’s experiences of health and social care, including access to care, use of services and products, and the interaction with care providers. NHS Digital in England collects data from local authorities on the number of carers and people with support needs and the services they access. This data does not provide a gender breakdown. Caring can have many positive and negative impacts on carers’ health and wellbeing. For example, caring can improve physical health, provide a sense of pride and purpose, and reduced stress levels for those who undertake a caring role by choice. Negatives of caring include financial concerns, social isolation, a reduction in earnings, and not being recognized as a carer or involved and consulted by health and social care professionals. Treating male and female carers differently is by definition unequitable and precludes one gender from receiving the benefits of caring whilst potentially overburdening the other with the negatives of caring. In order to explore the issue on a preliminary basis, five local authorities who provide statutory adult social care services in England were sent Freedom of Information requests in 2019. The authorities were selected to include county councils and London boroughs. The authorities were asked to provide data on the amount of money spent on care at home packages to people over 65 years, broken down by gender and carer gender for each financial year between 2013 and 2019. Results indicated that in each financial year, female carers supporting someone over 65 years received less financial support for care at home support packages than male carers. Over the six-year period, this difference equated to a £9.5k deficit in financial support received on average per female carer when compared to male carers. An example of a London borough with the highest disparity presented an average weekly spend on care at home for people over 65 with a carer of £261.35 for male carers and £165.46 for female carers. Consequently, female carers in this borough received on average £95.89 less per week in care at home support than male carers. This highlights a real and potentially detrimental disparity in the care support received to female carers in order to support them to continue to care in parts of England. More research should be undertaken in this area to better explore this issue and to understand if these findings are unique to these social care providers or part of a wider phenomenon. NHS Digital should request local authorities collect data on gender in the same way that large employers in the United Kingdom are required by law to provide data on staff salaries by gender. People who allocate social care packages of support should consider the impact of gender when allocating support packages to people with support needs and who have carers to reduce any potential impact of gender bias on their decision-making.

Keywords: caregivers, carers, gender equality, social care

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3036 Needs-Gap Analysis on Culturally and Linguistically Diverse Grandparent Carers ‘Hidden Issues’: An Insight for Community Nurses

Authors: Mercedes Sepulveda, Saras Henderson, Dana Farrell, Gaby Heuft

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In Australia, there is a significant number of Culturally and Linguistically Diverse (CALD) Grandparent Carers who are sole carers for their grandchildren. Services in the community such as accessible healthcare, financial support, legal aid, and transport to services can assist Grandparent Carers to continue to live in their own home whilst caring for their grandchildren. Community nurses can play a major role by being aware of the needs of these grandparents and link them to services via information and referrals. The CALD Grandparent Carer experiences have only been explored marginally and may be similar to the general Grandparent Carer population, although cultural aspects may add to their difficulties. This Needs-Gap Analysis aimed to uncover ‘hidden issues’ for CALD Grandparent Carers such as service gaps and actions needed to address these issues. The stakeholders selected for this Needs-Gap Analysis were drawn from relevant service providers such as community and aged care services, child and/or grandparents support services and CALD specific services. One hundred relevant service providers were surveyed using six structured questions via face to face, phone interviews, or email correspondence. CALD Grandparents who had a significant or sole role of being a carer for grandchildren were invited to participate through their CALD community leaders. Consultative Forums asking five questions that focused on the caring role, issues encountered, and what needed to be done, were conducted with the African, Asian, Spanish-Speaking, Middle Eastern, European, Pacific Islander and Maori Grandparent Carers living in South-east Queensland, Australia. Data from the service provider survey and the CALD Grandparent Carer forums were content analysed using thematic principles. Our findings highlighted social determinants of health grouped into six themes. These were; 1) service providers and Grandparent Carer perception that there was limited research data on CALD grandparents as carers; 2) inadequate legal and financial support; 3) barriers to accessing information and advice; 4) lack of childcare options in the light of aging and health issues; 5) difficulties around transport; and 6) inadequate technological skills often leading to social isolation for both carer and grandchildren. Our Needs-Gap Analysis provides insight to service providers especially health practitioners such as doctors and community nurses, particularly on the impact of caring for grandchildren on CALD Grandparent Carers. Furthermore, factors such as cultural differences, English language difficulties, and migration experiences also impacted on the way CALD Grandparent Carers are able to cope. The findings of this Need-Gap Analysis signposts some of the ‘ hidden issues’ that CALD Grandparents Carers face and draws together recommendations for the future as put forward by the stakeholders themselves.

Keywords: CALD grandparents, carer needs, community nurses, grandparent carers

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3035 A Failure to Strike a Balance: The Use of Parental Mediation Strategies by Foster Carers and Social Workers

Authors: Jennifer E Simpson

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Background and purpose: The ubiquitous use of the Internet and social media by children and young people has had a dual effect. The first is to open a world of possibilities and promise that is characterized by the ability to consume and create content, connect with friends, explore and experiment. The second relates to risks such as unsolicited requests, sexual exploitation, cyberbullying and commercial exploitation. This duality poses significant difficulties for a generation of foster carers and social workers who have no childhood experience to draw on in terms of growing up using the Internet, social media and digital devices. This presentation is concerned with the findings of a small qualitative study about the use of digital devices and the Internet by care-experienced young people to stay in touch with their families and the way this was managed by foster carers and social workers using specific parental mediation strategies. The findings highlight that restrictive strategies were used by foster carers and endorsed by social workers. An argument is made for an approach that develops a series of balanced solutions that move foster carers from such restrictive approaches to those that are grounded in co-use and are interpretive in nature. Methods: Using a purposive sampling strategy, 12 triads consisting of care-experienced young people (aged 13-18 years), their foster carers and allocated social workers were recruited. All respondents undertook a semi-structured interview, with the young people detailing what social media apps and other devices they used to contact their families via an Ecomap. The foster carers and social workers shared details of the methods and approaches they used to manage digital devices and the Internet in general. Data analysis was performed using a Framework analytic method to explore the various attitudes, as well as complementary and contradictory perspectives of the young people, their foster carers and allocated social workers. Findings: The majority of foster carers made use of parental mediation strategies that erred on the side of typologies that included setting rules and regulations (restrictive), ad-hoc checking of a young person’s behavior and device (monitoring), and software used to limit or block access to inappropriate websites (technical). It was noted that minimal use was made by foster carers of parental mediation strategies that included talking about content (active/interpretive) or sharing Internet activities (co-use). Amongst the majority of the social workers, they also had a strong preference for restrictive approaches. Conclusions and implications: Trepidations on the part of both foster carers and social workers about the use of digital devices and the Internet meant that the parental strategies used were weighted more towards restriction, with little use made of approaches such as co-use and interpretative. This lack of balance calls for solutions that are grounded in co-use and an interpretive approach, both of which can be achieved through training and support, as well as wider policy change.

Keywords: parental mediation strategies, risk, children in state care, online safety

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3034 Ideas for Musical Activities and Games in the Early Year (IMAGINE-Autism): A Case Study Approach

Authors: Tania Lisboa, Angela Voyajolu, Adam Ockelford

Abstract:

The positive impact of music on the development of children with autism is widely acknowledged: music offers a unique channel for communication, wellbeing and self-regulation, as well as access to culture and a means of creative engagement. Yet, no coherent program exists for parents, carers and teachers to follow with their children in the early years, when the need for interventions is often most acute. Hence, research and the development of resources is urgently required. Autism is a project with children on the autism spectrum. The project aims at promoting the participants’ engagement with music through involvement in specially-designed musical activities with parents and carers. The main goal of the research is to verify the effectiveness of newly designed resources and strategies, which are based on the Sounds of Intent in the Early Years (SoI-EY) framework of musical development. This is a pilot study, comprising case studies of five children with autism in the early years. The data comprises semi-structured interviews, observations of videos, and feedback from parents on resources. Interpretative Phenomenological Analysis was chosen to analyze the interviews. The video data was coded in relation to the SoI-EY framework. The feedback from parents was used to evaluate the resources (i.e. musical activity cards). The participants’ wider development was also assessed through selected elements of the Early Years Foundation Stage (EYFS), a national assessment framework used in England: specifically, communication, language and social-emotional development. Five families of children on the autism spectrum (aged between 4-8 years) participated in the pilot. The research team visited each family 4 times over a 3-month period, during which the children were observed, and musical activities were suggested based on the child’s assessed level of musical development. Parents then trialed the activities, providing feedback and gathering further video observations of their child’s musical engagement between visits. The results of one case study will be featured in this paper, in which the evidence suggests that specifically tailored musical activity may promote communication and social engagement for a child with language difficulties on the autism spectrum. The resources were appropriate for the children’s involvement in musical activities. Findings suggest that non-specialist musical engagement with family and carers can be a powerful means to foster communication. The case study featured in this paper illustrates this with a child of limited verbal ability. There is a need for further research and development of resources that can be made available to all those working with children on the autism spectrum.

Keywords: autism, development, music education, resources

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3033 The Impact of Family Involvement in Management on Firm’s Innovation: Evidence From Chinese Family Firms

Authors: Chen Jun

Abstract:

This study investigates the impact of family involvement, a pivotal factor shaping the management structure of family firms, on the firm’s innovation outputs. The independent variable focuses on the percentage number of family members serving as directors, supervisors and senior management. Our hypothesis suggests that family involvement tends to make management more conservative, thereby increasing the likelihood of impeding innovation investments and resulting in adverse effects on innovation output. Our findings reveal that Chinese family firms with high family involvement exhibit poorer innovation outputs compared to those with lower family involvement. Subsample analyses indicate that this negative influence of family involvement on innovation output is strengthened as the firm faces higher industry competition and a low marketization context. The findings of our paper contribute to the literature on family involvement by empirically illustrating how family involvement hinders innovation efforts and performance in Chinese family firms.

Keywords: family firm, family involvement, firm innovation, Chinese family firm

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3032 Non-Family Members as Successors of Choice in South African Family Businesses

Authors: Jonathan Marks, Lauren Katz

Abstract:

Family firms are a vital component of a country’s stability, prosperity and development. Their sustainability, longevity and continuity are critical. Given the premise that family firms wish to continue the business for the benefit of the family, the family founder / owner is faced with an emotionally charged transition option; either to transfer the family business to a family member or to transfer the firm to a non-family member. The rationale employed by family founders to select non-family members as successors/ executives of choice and the concomitant rationale employed by non-family members to select family firms as employers of choice, has been under-researched in the literature of family business succession planning. This qualitative study used semi-structured interviews to gain access to family firm founders/ owners, non-family successors/ executives and industry experts on family business. The findings indicated that the rationale for family members to select non-family successors/ executives was underpinned by the objective to grow the family firm for the benefit of the family. If non-family members were the most suitable candidates to ensure this outcome, family members were comfortable to employ non-family members. Non- family members, despite the knowledge that benefit lay primarily with family members, chose to work for family firms for personal benefits in terms of wealth, security and close connections. A commonly shared value system was a pre-requisite for all respondents. The research study provides insights from family founders/ owners, non-family successors/ executives, and industry experts on the subject of succession planning outside the family structure.

Keywords: agency theory, family business, institutional logics, non-family successors, Stewardship Theory

Procedia PDF Downloads 329
3031 Family Business Succession through the Eye of the Upper Echelon Theory: A Phenomenological Approach

Authors: Ruswiati Suryasaputra, Linda Salim

Abstract:

This concept paper, initially a proposal for the completion of the degree of Doctor of Philosophy, is seeking to gain more understanding of family business succession in order to extend the average lifespan of family business that has shrunken significantly for the past 20 years. While multitude studies have been done in family business succession, the average lifespan of a family business continues to decline sharply over the past two decades to only 24 years, or 1.5 generations, in 2010, from 50-60 years, equivalent to 3 generations, as recently as 1990. While the qualitative approach of this study will not churn a theoretical framework unique to the family business field, it will bring to the surface important issues during a family business succession process that have been hidden behind the mostly profit-making issues that have been the main highlight of the family business field.

Keywords: family business, succession, nepotism, family studies

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3030 Diagnose of the Future of Family Businesses Based on the Study of Spanish Family Businesses Founders

Authors: Fernando Doral

Abstract:

Family businesses are a key phenomenon within the business landscape. Nevertheless, it involves two terms (“family” and “business”) which are nowadays rapidly evolving. Consequently, it isn't easy to diagnose if a family business will be a growing or decreasing phenomenon, which is the objective of this study. For that purpose, a sample of 50 Spanish-established companies from various sectors was taken. Different factors were identified for each enterprise, related to the profile of the founders, such as age, the number of sons and daughters, or support received from the family at the moment to start it up. That information was taken as an input for a clustering method to identify groups, which could help define the founders' profiles. That characterization was carried as a base to identify three factors whose evolution should be analyzed: family structures, business landscape and entrepreneurs' motivations. The analysis of the evolution of these three factors seems to indicate a negative tendency of family businesses. Therefore the consequent diagnosis of this study is to consider family businesses as a declining phenomenon.

Keywords: business diagnose, business trends, family business, family business founders

Procedia PDF Downloads 174
3029 The Fidget Widget Toolkit: A Positive Intervention Designed and Evaluated to Enhance Wellbeing for People in the Later Stage of Dementia

Authors: Jane E. Souyave, Judith Bower

Abstract:

This study is an ongoing collaborative project between the University of Central Lancashire and the Alzheimer’s Society to design and test the idea of using interactive tools for a person living with dementia and their carers. It is hoped that the tools will fulfill the possible needs of engagement and interaction as dementia progresses, therefore enhancing wellbeing and improving quality of life for the person with dementia and their carers. The project was informed by Kitwood’s five psychological needs for producing wellbeing and explored evidence that fidgeting is often seen as a form of agitation and a negative symptom of dementia. Although therapy for agitation may be well established, there is a lack of appropriate items aimed at people in the later stage of dementia, that are not childlike or medical in their aesthetic. Individuals may fidget in a particular way and the tools in the Fidget Widget Toolkit have been designed to encourage repetitive movements of the hand, specifically to address the abilities of people with relatively advanced dementia. As an intervention, these tools provided a new approach that had not been tested in dementia care. Prototypes were created through an iterative design process and tested with a number of people with dementia and their carers, using quantitative and qualitative methods. Dementia Care Mapping was used to evaluate the impact of the intervention in group settings. Cohen Mansfield’s Agitation Inventory was used to record the daily use and interest of the intervention for people in their usual place of residence. The results informed the design of a new set of devices to promote safe, stigma free fidgeting as a positive experience, meaningful activity and enhance wellbeing for people in the later stage of dementia. The outcomes addressed the needs of individuals by reducing agitation and restlessness through helping them to connect, engage and act independently, providing the means of doing something for themselves that they were able to do. The next stage will be to explore the commercial feasibility of the Fidget Widget Toolkit so that it can be introduced as good practice and innovation in dementia care. It could be used by care homes, with carers and their families to support wellbeing and lead the way in providing some positive experiences and person-centred approaches that are lacking in the later stage of dementia.

Keywords: dementia, design, fidgeting, healthcare, positive moments, quality of life, wellbeing

Procedia PDF Downloads 243
3028 Role of Family for Grooming a Child: A Protective Step for Vulnerable Child

Authors: Arpita Sabat, Kanaklata Samal

Abstract:

A child is the most innocent being on the earth. It is born innocent but the family, the community, the institution and the world at large always butcher its innocence. This paper aims at the role of family for the development of a child in different ethnic or social groups. Family, in fact, is the nucleus in the growth and development of the child. A child grows up with the idea that a family is the world around him. The child tries to emulate consciously or unconsciously from the surrounding. This imitation has serious impact on the development of the child. It even sometimes cripples or stunts the growth of a mind. It results in the disability of the child. All policies about education or changing of curriculum can not bring about a change in the plight of a child’s life unless there is a serious thinking about the role of a family and the contribution of a family to the development of a child.

Keywords: vulnerable child, grooming, surrounding, role of family

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3027 Distorted Digital Mediated Communication: An Analysis of the Effect of Smartphone on Family Communication in Nigeria

Authors: Peter E. Egielewa

Abstract:

Communication through the smartphone connects people globally. However, since the last 10 years, there has been an increasing shift from the social engagement in the family to the digital mediated communication aided by the smartphone. The traditional family communication had largely been oral and relational, which the smartphone is now digitally mediating. The study employs mixed research method of quantitative and qualitative research design and deploys questionnaire to elicit responses from both parents and children of 50 purposively selected families from five villages in Southern Nigeria that are very active with smartphone use. Based on the Theory of Family Systems, preliminary findings show that the smartphone is becoming an addiction among Nigerian family members and has shifted the dynamics of family communication from relational to digital culture. The research concludes that smartphone use affects family communication negatively and recommends the moderation of smartphone use in the family and the search for alternative platforms for family communication that minimises smartphone addiction.

Keywords: digital, distorted communication, family, Nigeria, smartphone

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3026 The Effect of Family Support on Employee Satisfaction and Perception of Work-Family Conflict: The Case of Oil Sector Employees in Kuwait

Authors: Ali H. Muhammad

Abstract:

This paper investigates both instrumental and emotional family support on employee job satisfaction and perception of work-family conflict. Instrumental family support is manifested in family behavior that contributes to the reduction of employee’s family responsibilities and keeping the physical home environment in a proper shape. Emotional family support includes the encouragement and praise that the employee receives from his family and families for the employee’s work problem and their role in assisting the employees in dealing with these problems. The paper suggests that instrumental and emotional family support increases employee’s job satisfaction. Furthermore, the study proposes that family support decreases employee’s perception of work-family conflict. In addition, this study examines the reliability and validity of the family support index developed by Lynda King and her colleagues in 1995. Confirmatory factor analysis is used to test the validity of the instrument in an Arab business setting. A paper-pencil questionnaire was used to collect data from a random sample of 70 Kuwaiti employees working in the oil sector. Data were analyzed using factor analysis, reliability tests, and regression analysis. Results confirmed the research hypothesis. Family support had a positive effect on job satisfaction. Furthermore, family support significantly contributed to the reduction of employee perception of work-family conflict.

Keywords: family support, job satisfaction, work-family conflict, Kuwait oil sector

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3025 The Use of Video Conferencing to Aid the Decision in Whether Vulnerable Patients Should Attend In-Person Appointments during a COVID Pandemic

Authors: Nadia Arikat, Katharine Blain

Abstract:

During the worst of the COVID pandemic, only essential treatment was provided for patients needing urgent care. With the prolonged extent of the pandemic, there has been a return to more routine referrals for paediatric dentistry advice and treatment for specialist conditions. However, some of these patients and/or their carers may have significant medical issues meaning that attending in-person appointments carries additional risks. This poses an ethical dilemma for clinicians. This project looks at how a secure video conferencing platform (“Near Me”) has been used to assess the need and urgency for in-person new patient visits, particularly for patients and families with additional risks. “Near Me” is a secure online video consulting service used by NHS Scotland. In deciding whether to bring a new patient to the hospital for an appointment, the clinical condition of the teeth together with the urgency for treatment need to be assessed. This is not always apparent from the referral letter. In addition, it is important to judge the risks to the patients and carers of such visits, particularly if they have medical issues. The use and effectiveness of “Near Me” consultations to help decide whether vulnerable paediatric patients should have in-person appointments will be illustrated and discussed using two families: one where the child is medically compromised (Alagille syndrome with previous liver transplant), and the other where there is a medically compromised parent (undergoing chemotherapy and a bone marrow transplant). In both cases, it was necessary to take into consideration the risks and moral implications of requesting that they attend the dental hospital during a pandemic. The option of remote consultation allowed further clinical information to be evaluated and the families take part in the decision-making process about whether and when such visits should be scheduled. These cases will demonstrate how medically compromised patients (or patients with vulnerable carers), could have their dental needs assessed in a socially distanced manner by video consultation. Together, the clinician and the patient’s family can weigh up the risks, with regards to COVID-19, of attending for in-person appointments against the benefit of having treatment. This is particularly important for new paediatric patients who have not yet had a formal assessment. The limitations of this technology will also be discussed. It is limited by internet availability, the strength of the connection, the video quality and families owning a device which allows video calls. For those from a lower socio-economic background or living in some rural areas, this may not be possible or limit its usefulness. For the two patients discussed in this project, where the urgency of their dental condition was unclear, video consultation proved beneficial in deciding an appropriate outcome and preventing unnecessary exposure of vulnerable people to a hospital environment during a pandemic, demonstrating the usefulness of such technology when it is used appropriately.

Keywords: COVID-19, paediatrics, triage, video consultations

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3024 Impact of Work and Family Conflict on Employee Self Esteem

Authors: Romana P. Khokhar

Abstract:

The purpose of this study was to explore the impact of work-family conflict on self-esteem. On the basis of the literature reviewed, it was hypothesized that 1) work-family conflict has an impact on self- esteem, 2). There would be a gender difference on the variable of work family conflict. Data for this study was taken from a sample of 70 employees within the banking industry since this industry is generally associated with higher levels of work-family conflict. Statistical tests performed were regression and t-test. Self-esteem was assessed with the 10-item Rosenberg Self-Esteem Scale (RSE; Rosenberg, 1965) and Work-Family Conflict Scale (WFCS; Netemeyer, R. G., Boles, J. S., & McMurrian, R. 1996) was used to assess the level of work –family conflict. The results indicated that an increase in work-family conflict resulted in lower self-esteem due to the various pressures evidenced in a complicated network of direct and indirect influences. It was also determined that there is less effect of work-family conflict on the female workers, as opposed to the male population, leading to the conclusion that in the case of the female workers the impact on self-esteem was not significant.

Keywords: work and family conflict, self-esteem, employee

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3023 Chronic Care Management for the Medically Vulnerable during the Pandemic: Experiences of Family Caregivers of Youth with Substance Use Disorders in Zambia

Authors: Ireen Manase Kabembo, Patrick Chanda

Abstract:

Background: Substance use disorders are among the chronic conditions that affect all age groups. Worldwide, there is an increase in young people affected by SUDs, which implies that more family members are transitioning into the caregiver role. Family caregivers play a buffering role in the formal healthcare system due to their involvement in caring for persons with acute and chronic conditions in the home setting. Family carers of youth with problematic alcohol and marijuana use experience myriad challenges in managing daily care for this medically vulnerable group. In addition, the poor health-seeking behaviours of youth with SUDs characterized by eluding treatment and runaway tendencies coupled with the effects of the pandemic made caregiving a daunting task for most family caregivers. Issues such as limited and unavailable psychotropic medications, social stigma and discrimination, financial hurdles, systemic barriers in adolescent and young adult mental healthcare services, and the lack of a perceived vulnerability to Covid-19 by youth with SUDs are experiences of family caretakers. Methods: A qualitative study with 30 family caregivers of youth aged 16-24 explored their lived experiences and subjective meanings using two in-depth semi-structured interviews, a caregiving timeline, and participant observation. Findings: Results indicate that most family caregivers had challenges managing care for treatment elusive youth, let alone having them adhere to Covid-19 regulations. However, youth who utilized healthcare services and adhered to treatment regimens had positive outcomes and sustained recovery. The effects of the pandemic, such as job losses and the closure of businesses, further exacerbated the financial challenges experienced by family caregivers, making it difficult to purchase needed medications and daily necessities for the youth. The unabated stigma and discrimination of families of substance-dependent youth in Zambian communities further isolated family caregivers, leaving them with limited support. Conclusion: Since young people with SUDs have a compromised mental capacity due to the cognitive impairments that come with continued substance abuse, they often have difficulties making sound judgements, including the need to utilize SUD recovery services. Also, their tendency to not adhere to the Covid-19 pandemic requirements places them at a higher risk for adverse health outcomes in the (post) pandemic era. This calls for urgent implementation of robust youth mental health services that address prevention and recovery for these emerging adults grappling with substance use disorders. Support for their family caregivers, often overlooked, cannot be overemphasized.

Keywords: chronic care management, Covid-19 pandemic, family caregivers, youth with substance use disorders

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3022 Moderating Effects of Family Structure on College Achievement

Authors: Jennifer Knudsen

Abstract:

This study observes the moderating effects of family structure on College Achievement across cohorts. Over the past half-century, social stigmas surrounding non-traditional families have shifted, as they make up an increasing proportion of American families. Using the General Social Survey, this study employs a varying coefficient model to test if family structure moderates the effects of other background variables on respondents’ educational attainment. Initial analysis suggests that living in alternative family arrangements has an increasingly negative effect on college achievement, whereas living in an intact family with a mother and father has a positive effect on college achievement.

Keywords: education, family, college, family structure

Procedia PDF Downloads 83
3021 A Qualitative Study to Explore the Social Perception and Stigma around Disability, and Its Impact on the Caring Experiences of Mothers of Children with Physical Disability in Bangladesh

Authors: Farjina Malek, Julie King, Niki Edwards

Abstract:

Across the globe more than a billion people live with a disability and a further billion people, mostly carers, are indirectly impacted. While prevalence data is problematic, it is estimated that more than 15% of the population in Bangladesh live with a disability. Disability service infrastructure in Bangladesh is under-developed; and consequently, the onus of care falls on family, especially on mothers. Within the caring role, mothers encounter many challenging experiences which are not only due to the lack of support delivered through the Bangladeshi health care system but also related to the existence of stigma and perception around disability in the Bangladeshi society. Within this perception, the causes of disability are mostly associated with 'God’s will'; 'possession of ghosts on the disabled person'; and 'karma or the result of past sins of the family members especially the mothers'. These beliefs are likely to have a significant impact on the well-being of mothers and their caring experience of children with disability. This is an ongoing qualitative study which is conducting in-depth interviews with 30 mothers from five districts (Dhaka, Mymensingh, Manikganj, Tangail, and Gazipur) of Bangladesh with the aim to explore the impact of social perception and stigma around physical disability on the caring role of the mothers of children with physical disability. The major findings of this study show that the social perception around disability and the social expectation from a mother regarding her caring role have a huge impact on the well-being of mothers. Mothers are mostly expected to take their child on their lap to prove that they are ‘good mother’. These practices of lifting their children with physical disability and keeping them on the lap for a long time often cause chronic back pain of the mothers. Existing social beliefs consider disability as a ‘curse’ and punishment for the ‘sins’ of the family members, most often by the mother. Mothers are blamed if they give birth to ‘abnormal’ children. This social construction creates stigma, and thus, the caring responsibility of mothers become more challenging. It also encourages the family and mothers to hide their children from the society and to avoid seeking accessible disability services. The mothers also compromise their careers and social interaction as they have to stay with their children at home, and that has a significant impact on personal wellbeing, income, and empowerment of the mothers. The research is informed by intersectional theory and employed an interpretive phenomenological methodology to explore mothers’ experience of caring their children with physical disability, and the contribution and impact of key relationships within the family and the intersection with community and services.

Keywords: mother, family carer, physical disability, children, social stigma, key relationship

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