Parent,carer, person: future plans and the identities of parent carers for people with disabilities

Parent carers are often central in future planning for their children with disability; however, little is known about the implications of planning for parents’ futures and aspirations. In understanding these, parents’ own identities are important, but how these identities intersect with their planning is not well understood. This study explored how parents were positioned in discussions about planning. Interviews with parents and planning service staff highlighted three positions among parents – carer, parent, and person – representing multiple, intersecting identities. These impacted on and were impacted by planning in particular ways. Understanding these processes may assist programmes to support parents more effectively.     

What Changes for Young Carers? A Qualitative Evaluation of the Impact of Dedicated Support Provision for Young Carers

In 2016, the Children’s Commissioner for England reported that the most frequent provision for young carers (YCs) comes from dedicated YC services. This study formed one part of a three-year evaluation of support for YCs and their families provided by the Hampshire YCs Alliance (HYCA), a county-wide collaboration of ten YC services in the UK. It set out to explore the following primary questions; (a) what are the most important changes that the YC services made to YCs and their families? (b) what is it about the services that creates those changes? Semi-structured interviews were carried out in 2017, with YCs aged 9–17 (n = 8), their parents (n = 5), HYCA staff (n = 6) and professionals from other stakeholder organisations (n = 5) and a thematic analysis was undertaken. Reflecting previous research that YCs and their families have a broad range of needs, findings also reveal how YC services support them through a diverse range of interventions. Support led to a diverse range of positive changes for YCs and their families. A number of service features that facilitate change for YCs, as well as ‘key dynamics’ important in facilitating change were identified. These findings have led to a conceptual framework of how YC services facilitate change for YCs and are important for understanding the impact these dedicated services can make to the lives of YCs and how they facilitate change. Together they have implications for the development and commissioning of interventions for YCs and families and how service providers promote their support provision.

     

‘Similar but Different’ Conversations: Working with Denial in Cases of Severe Child Abuse

This article describes a particular aspect of a service called ‘Resolutions’ that has been developed at the NSPCC Child and Family Centre in Bristol, England. The Resolutions service works with families where parents and/or carers are disputing responsibility for serious abuse of their children, but where child protection agencies deem at least one of them culpable on a balance of probabilities. The service's general approach to developing partnerships with families is briefly considered, but the article concentrates on a particular approach. This is where parents and/or carers who are disputing abuse of their children roleplay a ‘similar but different’ family. This enables key issues in relation to child abuse to be discussed by the parents and/or carers. It also facilitates the gaining of greater understanding that helps them ensure the future safety of their own and other children.     

The life cycle and support networks of families with a person with a learning difficulty

This paper presents data from semi-structured interviews with 190 families enabling comparisons across the life cycle of problems faced by carers of children and adults with learning difficulties, the informal support received and support from the statutory services. The size of the kin support network described was inversely related to the number of marked behaviour problems. Age, social class and degree of handicap were all found to be associated with different expectations about services and services received. Frequency of professional visits appeared to relate more to dependency levels and age than to numbers of behavioural problems. One implication of these trends was a marked service deficit for carers of adults with either high levels of dependency or challenging behaviour. Two groups of carers were particularly vulnerable-carers of adolescents and carers of individuals aged 40 years or over. The implications for professional practice are discussed.     

A cross-national and comparative classification of in-country awareness and policy responses to ‘young carers’

The reality for many families where there is chronic illness, mental health problems, disability, alcohol or substance misuse is that children under the age of 18 are involved in caring. Many of these children – known as ‘young carers’ – will be providing regular and significant care, either episodically or over many years, often ‘hidden’ to health, social care and other welfare professionals and services. These children have most often been invisible in social policy and professional practice. What are the reasons why some countries recognize young carers as a priority for social policy while others (most) do not? What are the key factors that influence a country’s awareness and responses to these children? This article provides an original classification and analysis of country-level responses to young carers, drawing on published research, grey literature, policy documents and the authors’ extensive engagement in policy and practice networks for young carers and their families in a wide range of countries. The analysis identifies two of the key factors that influence the extent and nature of these policy responses, focusing on the importance of a reliable in-country research base and the contribution of influential national NGOs and their networks.     

Mental Health Consumer and Carer Participation in Professional Education: ‘Getting There Together’ for Children of Parents with Mental Illness and Their Families

Abstract

‘Getting There Together’ is a professional education seminar developed as a collaborative project by professionals, mental health consumers and carers aimed at service providers who work with children of parents with mental illness and their families. The need for such professional education concerning this group is well recognised and the project reported herein was initiated by a reference group of professionals, consumers and carers focusing on children of parents with mental illness in the Eastern region of Melbourne (Victoria, Australia). The project began and continued as a collaborative effort during development and implementation, which ensured the experience, point of view and voice of consumers and carers was central to the material prepared, and at the time of seminar presentations. Seminar participants were from the family welfare, child care and supported housing sectors. Seminar participants found the first person accounts of consumers and carers the most helpful aspects of the seminars because they gave new insights into the experiences of carers and of mental health consumers as parents, as well as an understanding of ‘… the whole family, and how the child fits into the picture’.     

Family carers' views of services for people with learning disabilities from Black and minority ethnic groups: a qualitative study of 30 families in a south London borough

In 2001, the UK Government identified the widespread neglect of the needs of people with learning disabilities from Black and minority ethnic communities. In this qualitative study informal interviews were held with 30 family carers of adults with learning disabilities from Black and minority ethnic communities. Their views were sought regarding services received and services needed, and cultural or communication barriers faced in accessing appropriate services. The study showed that although carers were largely satisfied with services actually received, service provision was highly inadequate and ineffective. Even very elderly and ill carers and those caring for people with severe disabilities received little support. Social worker support was negligible, and future planning rare. It is clear that the needs of carers from Black and minority ethnic communities are not being met. The situation would be considerably eased by adequate social worker support. Stereotypes of supportive family networks, (especially regarding south Asian families) proved to be unfounded.     

Disadvantage and Discrimination Compounded: the experience of Pakistani and Bangladeshi parents of disabled children in the UK

This paper discusses a qualitative and quantitative study of the circumstances of 20 Pakistani and Bangladeshi families with one or more severely disabled children living in Birmingham, England. Parents and other adult carers were interviewed using a combination of structured questionnaires and a semi-structured interview schedule focusing on the families' material circumstances, their use of formal services, informal care arrangements, and aspects of the parents' social and psychological well-being. The study suggests that previous national surveys of disabled families may have under-estimated the extent of material disadvantage, while it confirms that health and social care professionals should not assume that Pakistani and Bangladeshi parents have recourse to high levels of extended family support. The combination of disadvantaged circumstances and difficulties in securing access to appropriate services, which are found for the majority of families with a disabled child, was particularly acute for these ethnic minority families, suggesting the additional dimension of institutional racism.     

Carers of People with Mental Illness from Culturally and Linguistically Diverse Communities

Australia is a multicultural country and it is common for families from culturally and linguistically diverse (CALD) communities to care for their relatives with mental illness. However, there are limited Australian studies examining the experiences of informal carers of people with mental illness from CALD communities. A scoping review was conducted to search for peer-reviewed articles reporting the perception of carers regarding their caregiving experiences, wellbeing, and needs. Using cultural responsiveness as a conceptual framework, this study analysed the findings of the identified studies to generate themes. Findings show that carers experience severe caregiving challenges and face considerably poor culturally oriented services in mental health. Social work implications concerning the need to provide culturally responsive practice in mental health services are discussed.     

Living with Duchenne Muscular Dystrophy: Relational Autonomy and Decision‐Making

Interviews were conducted with boys and young men who have Duchenne muscular dystrophy, exploring their thoughts on making a decision to participate in medical research. This article focuses on one of the key findings, discussing how the participants identified their parents as carers, spokespersons and advisors. The term ‘relational autonomy’ encapsulates these co‐operative relationships, illustrating how they can help young people living with a degenerative disability to exercise some agency and autonomy. The boys and their families have demonstrated how disabled children who are physically dependent can be supported by their parents, without compromising independence.     

Children of prisoners: exploring the impact of families' reappraisal of the role and status of the imprisoned parent on children's coping strategies

Qualitative data from a larger study on the impact of parental imprisonment in four countries found that children of prisoners face fundamentally similar psychological and social challenges. The ways that children cope, however, are influenced by the interpretative frame adopted by the adults around them, and by how issues of parental imprisonment are talked about in their families. This article argues that families have to reappraise their view of the imprisoned parent and then decide on their policy for how to deal with this publicly. Their approach may be based on openness and honesty or may emphasise privacy and secrecy, or a combination of these. Children are likely to be influenced by their parents'/carers' views, although these may cause conflict for them. Where parents/carers retain a positive view of the imprisoned parent, children are likely to benefit; where parents/carers feel issues of shame and stigma acutely, this is likely to be transmitted to their children. This is important for social workers and practitioners involved in supporting prisoners' families and for parenting programmes.     

‘If I was a different ethnicity,would she treat me the same?’: Latino parents’ experiences obtaining autism services

This article reports on an ethnographic study with 12 Latino families of children on the autism spectrum related to obtaining autism services in Los Angeles County. Using critical discourse analysis of interviews, observations, and records, we consider the experiences of the Latino families in relation to: a discursively constructed ‘autism parent’ subject position that mandates ‘fighting’ service systems to ‘win’ autism services for children, originating from White middle-class parents’ socioeconomic resources and social capital; a neoliberal social services climate that assumes scarcity of available resources and prioritizes austerity in their authorization; and a media and institutional ‘cultural deficit’ discourse that attributes disparities in autism services for Latino children to their parents’ presumed culturally-based ‘passivity.’ We argue that parental discourse about fighting, or not fighting, for autism services is engendered by a tension between a parental logic of care, and the logic of competition of the economic market.     

'Young Carers' and Disabled Parents: Time for a change of direction?

In less than a decade, children who provide care for ill or disabled parents and siblings have become a major target of social welfare services. 'Young carers' suffer, it is suggested, from a degradation in mental and physical health, have damaged educational careers, restricted social networks, and will suffer long-term consequences in adult life as a result of their childhood caring roles. This paper argues that limited empirical evidence exists for these claims and that, where legitimate concerns arise, they are frequently related to poverty, social exclusion, and unsupported or inadequate parenting, and have no direct relationship to illness or impairment. While dedicated services to young carers have made a valuable contribution in highlighting an important social issue, a radical review of their place in the overall structure of support services for families affected by illness or disability is long overdue.     

The Role of Mobile Phones in Family Communication

Whilst there is a wealth of research into family communication and family relationships, there is little information about whether (and if so how) mobile phones have impacted on these processes. The authors’ study involved individual semi‐structured interviews with 60 families, including parents/carers and young people aged 11–17, to investigate this further. The interviews explored how mobile phones are used in family communication; participants’ views about the benefits and disadvantages of mobile phone use; and issues around safety, surveillance and privacy. The findings show that young people and parents see mobiles as a key way for families to keep in touch, and to monitor and ensure young people’s safety. However, some participants felt there was a downside to this, in relation to some young people either withdrawing into their own social worlds, or having a false feeling of security as a result of having a mobile. Gender differences in views and usage were also found. The paper concludes with some general comments about the role of mobile phones in family life.     

Supporting families: Outcomes of placement in voluntary out-of-home care for children and young people with disabilities and their families

Parents caring for children and young people with disabilities typically have extensive additional demands on their time and resources. This added pressure can significantly impact well-being and mental health. In extreme circumstances, parents may seek an out-of-home placement for their child. Previous research has looked into factors that influence decisions for families to place their child into out-of-home care but little is known about outcomes for these young people and their families. The Supporting Families study aimed to explore the impact of a voluntary out-of-home placement on young people with disabilities, and consequences for their families. Fourteen parents/carers, twenty six case managers, six accommodation services' managers, and four young people with disabilities participated in face-to-face and telephone interviews and focus groups. Participants reported a range of outcomes for young people in care. Positive outcomes included increased levels of respect for themselves and others, an improvement in independent living skills, and reductions in challenging behaviours. Negative outcomes centred on their experiences of grief, loss and rejection, as well as behavioural problems. Positive and negative outcomes were also found for families. For many parents/carers there was a reduction in perceived stress and caring load, as well as improved mental health and wellbeing for them and the child's siblings. However, parents/carers often experienced ongoing feelings of guilt, grief and loss. The study adds to knowledge about outcomes of being in voluntary out-of-home care for this small but vulnerable group of young people in care and their families.     

The intersection of employment and care: evidence from a UK case study

Working carers are a key focus of UK policies on health and social care and employment. Complementing national and European evidence, this paper presents a local case study of working carers. It draws on data from a county-wide survey containing a module on caring. Data were primarily categorical and were analysed using SPSS. Three quarters of all carers who responded to the survey were of working age: two thirds were employed and one third had been employed previously. The majority of working carers were mid-life extra-resident women. Over half of cared for relatives were elderly parents/in law; ‘physical illness’ was the primary cause of dependency. A tenth provided intensive care and half reported that caring adversely affected their health. Both were triggers for leaving employment. Two thirds of households received input from services and/or friends/family; being a co-resident carer appeared to mitigate against service allocation. Four issues were identified as pivotal to facilitating employment: access to advice and information, the availability of a matrix of affordable good-quality social-care services, ‘joined up’ needs assessment of the carer and cared for person, and employers identifying carers in their workforce. Europe's ageing profile underscores the study's timeliness.     

Parents’ and Professionals’ Perceptions of the Services of Families of Children with Intellectual Developmental Disabilities

This study aims to investigate differences in perception among Kuwaiti parents, teachers, and employees regarding the services that are needed in different special education settings. The participants (n = 135) included 45 parents of children with intellectual developmental disabilities (IDD), 63 teachers in special education schools, and 27 employees working in the Higher Council of the Disabled. A survey was conducted using Hassan’s (The needs of parents of children with disabilities in relationship with child’s age, gender, and type of disability, 1992) Arabic version of the Family Need Inventory. The findings showed differences in perception among parents, teachers, and employees regarding what they consider to be the most important services for families of children with IDD. Another result showed significant differences in perception among the three groups regarding services (match or/and mismatch of responses), except for 3 out of 35 types of services. Suggestions and implications are discussed to provide information to social service providers to help them evaluate the laws that pertain to disability in Kuwait. The findings of this study will help social service providers determine and implement laws that meet the needs of parents of children with IDD and give them the right to be full partners in their children’s education.     

Experiencing parenthood,care and spaces of hospitality

Drawing on research conducted in Australia and the United Kingdom, this paper explores how parenting and care provision is entangled with, and thus produced through, consumption in hospitality venues. We examine how the socio‐material practices of hospitality provision shape the enactment of parenting, alongside the way child‐parent/consumer‐provider interactions impact upon experiences of hospitality spaces. We argue that venues provide contexts for care provision, acting as spaces of sociality, informing children's socialization and offering temporary relief from the work of parenting. However, the data also highlight various practices of exclusion and multiple forms of emotional and physical labour required from care‐providers. The data illustrate children's ability to exercise power and the ways in which parents’/carers’ experiences of hospitality spaces are shaped by their enactment of discourses of ‘good parenting’. Finally, we consider parents’/carers’ coping behaviours as they manage social and psychological risks associated with consumption in such public spaces of leisure.     

WORKING CARERS OF OLDER ADULTS

Juggling work and care presents particular challenges to carers and employers. Employers are increasingly under pressure, both from within organizations and from recent government legislation and policy, to develop family-friendly policies to support informal carers in the workplace. Yet existing ‘family-friendly’ schemes and services are still primarily designed for working parents of young children and rarely address the needs of employees who care for older or disabled adults. This paper reports on a study which investigated how working carers and managers in two public sector organizations — a Social Services Department (SSD) and a National Health Service (NHS) Trust — combined their work and caring responsibilities. A multi-method approach was adopted consisting of five phases. First, a profile of the two organizations was established, followed by a short screening questionnaire to all employees to identify who was caring for an older adult over the age of 60. Third, a lengthier postal survey was sent to the 365 carers who had indicated a willingness to participate further. In the fourth and fifth phases, carers and managers were interviewed in depth about their experiences. This paper reports briefly on the survey, but then concentrates in particular on what was said in the interviews about what helps and hinders working carers of older adults. Despite the existence of policies to support carers, our findings suggest that these were far less important than informal support from colleagues and a sympathetic manager in the workplace. Commuting distance between work, home and the older person also posed difficulties for carers, along with inflexible schedules and work overload. Employers are urged to explore these issues further if they are serious about recruiting and retaining employees, and developing the work – life balance agenda to meet the needs of those caring for older and disabled adults.     

Factors Related to Transracial Adoptive Parents’ Levels of Cultural Competence

The purpose of this cross-sectional study was to examine the relationship of parents’ level of cultural competence with several factors. Exploratory regression analysis was utilized with a sample of transracial adoptive (TRA) parents of children born in Korea and China (n = 912). Results indicated that 16.2% of variance in a measure of TRA parents’ cultural competence was explained by families’ participation in postadoption support groups; parent's sex, that is, female; traveling to the child's country of origin for adoption; postadoption contact with adoption professionals; absence of biological children in the family; and families’ annual income over $75,000. Conclusions and implications for practice and research are discussed.