Hidden Children: Perspectives of Professionals on Young Carers of People with Mental Health Problems

Young carers of people with mental health problems are highly hidden, ostracised and vulnerable. To make matters worse, many professionals from the social, health and education sectors are not fully aware of the difficulties and central issues facing young carers of people with mental health problems. In order to make young carers of people with mental health problems more visible and to explore gaps in need and good practice from the perspectives of professionals, 65 participants were interviewed. The sample included professionals from the social, healthcare and voluntary sectors. Respondents were asked to discuss their understanding of young carers and appropriate interventions and methods to address young carers’ needs. Findings highlight: young carers’ isolation, stigma and restricted opportunities; fears involving family separation and child protection; and examples of good professional practice. New findings and examples of good professional practice that provide holistic, sensitive and effective support include: young carer groups and forums; young carer days; raising awareness of young carers in schools, especially via technology such as DVDs and the Internet; and having key workers to befriend young carers so as to advocate for better care, to provide emotional and psychological support and to facilitate young carer involvement.     

The Strengths and Difficulties Questionnaire: A Useful Screening Tool to Identify Mental Health Strengths and Needs in Looked After Children and Inform Care Plans at Looked After Children Reviews?

The mental health of Looked After Children is not routinely assessed either upon entering the care system or during their period in care. Many children only receive help when difficulties become entrenched and more intensive treatment is required. Often this occurs when placements are fragile or have broken down. The Department of Health, Social Services and Public Safety (DHSSPS) 2007 Consultation Paper “Care Matters in Northern Ireland—A Bridge to a Better Future” has recommended “systematic assessment of the psychological and emotional needs of children on the edge and LAC”. Prior to the focus group study outlined below, Strengths and Difficulties Questionnaire (SDQ) screening was undertaken with a sample of Looked After Children (n=76), 37 males and 39 females, in Homefirst Community Trust, aged 3-17 years (standard deviation=4.3), living with relatives or foster carers. Confirmed Neglect was recorded as the primary reason for becoming looked after in 75% (n=57) of the children screened. SDQ screening was undertaken with 76 (78%) carers, 64 (76%) teachers and 32 (87%) children aged 11+, and the findings provided to the child's social worker for consideration at the child's statutory review. Fifty-six per cent of carers, 39% of teachers and 30% of children identified significant difficulties, with 63% of carers, 35% of teachers and 45% of children stating that the difficulties had been present for over a year. Pre-test and post-test file audits were undertaken to ascertain whether SDQ screening had informed the child's care planning process. While care plans reflected an increase in referrals for further assessment and treatment in 42%, a number assessed with significant difficulties were not referred due to uncertainty about accessing appropriate services or concerns about swamping existing services. This paper outlines the findings of three focus groups with social workers and managers following SDQ screening of a sample of Looked After Children within four generic childcare teams and a team for children with special needs in Homefirst Community Trust. Participants reflected on the usefulness of the SDQ in identifying mental health strengths and difficulties to inform decision-making at Looked After Children Reviews. Participants recommended that routine SDQ screening is undertaken with all Looked After Children, with early intervention provided to children identified with some mental health difficulties and prioritisation of children with significant need. The usefulness of SDQ identification of child strengths as a foundation for promoting resilience in Looked After Children was also recognised. Recommendations were also made regarding specific service provision for Looked After Children and training for field social workers, link social workers and carers.     

Investigating the Effectiveness of the Incredible Years Basic Parenting Programme for Foster Carers in Northern Ireland

Children who are looked after experience significantly higher levels of social, emotional and behavioural difficulties than children who live with their family of origin. Such difficulties tend to be pervasive and can have detrimental consequences for placement stability, and ultimately for the child's ability to reach their potential. Government documents such as Care matters highlight the importance of providing ongoing training and support to foster carers to equip them with the necessary skills to manage the complex needs presented by children who are looked after. The nature of this training and support is often debated. With this in mind, Barnardo's Professional Fostering Service piloted the Incredible Years Basic Parenting Programme with 13 foster carers. The 12-week programme was evaluated using the Eyberg Child Behaviour Inventory pre and post intervention. Results provide a promising insight into the potential of the Incredible Years Basic Parenting Programme as a method of training and supporting foster carers.     

Incredible Years parent training support for foster carers in Wales: a multi‐centre feasibility study

Background the incidence of conduct disorder in young children is 10% in the general population and 37% among fostered children. Up to 40% of untreated children diagnosed with conduct disorder develop problems later in life including drug misuse, criminal and violent behaviour. There are more than 80 000 looked after children in the UK, with 5000 in Wales. Challenging child behaviour is the main reason for placement breakdown and has huge cost implications as challenging children cost up to 10 times more in service use than children without conduct disorder. The Incredible Years (IY) evidence‐based parenting programme is an effective, low cost solution in improving child behaviour and social competence in ‘conventional’ families and thus has the potential to support foster carers in managing difficult behaviours. Our main aims were to establish:

• ? The feasibility of delivery and the effectiveness of the IY parenting programme in supporting carers in managing difficult behaviour in looked after children.
• ? Service use costs for foster carers and looked after child.

Methods This was a 12‐month trial platform study with 46 foster carers in three authorities in Wales. Carers were allocated 2:1 intervention to waiting‐list control. Validated measures were used to assess ‘parenting’ competency, carers' depression levels, child behaviour and service use. Measures were administered at baseline and 6‐month follow‐up. Intervention carers received the programme between baseline and follow‐up. Results Analyses showed a significant reduction in child problem behaviour and improvement in carers' depression levels for intervention families at follow‐up, compared with control. Unexpectedly, there was a significant improvement in control carers' self‐reported ‘parenting’ strategies. Special education was the greatest service cost for looked after children. Conclusions Initial foster carer training could incorporate the IY programme to support carers in establishing positive relationships and managing difficult child behaviour. Programme participation may lead to reduced service use and improved placement stability.     

Caring for children with specialized health care needs in the community: the challenges for primary care

People needing intensive and specialized health care are being cared for now in community settings; this has implications for both primary health care professionals and family carers. This paper draws on research investigating how services can be developed to support families caring for children with complex health care needs, to consider the challenges facing professionals working in the primary health care sector. Interviews conducted with parents, professionals and those who fund and commission specialized health services reveal particular problems in relation to the purchasing and provision of short-term care and specialist equipment/therapies in the community. These problems need to be addressed if people with specialized needs are to be cared for outside hospitals. The new Primary Care Groups (PCGs) will have the opportunity to enhance the provision of these services. Primary care professionals will also need to work in partnership with other sectors of the health service and with local authority services, at both strategic and operational levels, to develop integrated and coordinated services for this growing group of people.     

Transition-Age Children With Mental Illness: Hearing the Voices of Mothers

Members of a local NAMI organization were surveyed in order to explore the perspectives of mothers of transitional age (18–25) children diagnosed with mental illness. Social workers in a diversity of mental health care settings can use this information to improve competence with this population. Results indicate a dynamic shift in the mothering role during this time period. Findings also suggest mothers and their transition-age children need emotional and practical support from social workers and other mental health professionals.     

An evaluation of mental health service provision in Northern Ireland

Although Northern Ireland has high levels of mental health problems, there has been a relative lack of systematic research on mental health services that can provide an evidence base for legal, policy, and service developments. This article aims to provide a review of the central issues relating to mental health service provision in Northern Ireland, and to gather the perceptions of different stakeholders of these services. The study utilised in‐depth qualitative interviews, focus groups, and an online survey to collect data from respondents throughout the region. This method involved the completion of semistructured interviews with significant mental health commissioners and senior managers, and with service‐users and their key workers. Focus groups sessions were also completed with mental health professionals, service‐users, and carers. Data collection occurred between December 2014 and June 2015. Thematic analysis was used to identify key issues. The findings identified that considerable progress had been made not only in the development of mental health services in the last decade, but also highlighted the significant limitations in current services. Most notably, strengths in provision included the transition from long‐stay hospital care to community‐based services and person‐centred approaches. The researchers identified the need to improve funding, address problems with fragmentation, and gaps in service provision. Based on these findings, the authors consider the implications for practice and policy relating to the human and organisational aspects of service development. In particular, services should be developed focusing on a recovery ethos and on person‐centred and relationship‐based approaches. The needs of carers should additionally be considered and programmes developed to tackle stigma.     

Statutory health assessments for looked‐after children: what do they achieve?

OBJECTIVE: To examine the outcomes of statutory health assessment of children looked after by an English City Council. DESIGN: Retrospective longitudinal documentary analysis. SETTING AND PARTICIPANTS: Health records of all children looked after by Southampton City Council who had attended at least two statutory health assessments within a designated paediatric service from 1996 to 1999. MAIN VARIABLES STUDIED: Demographic characteristics of the children; physical and mental health problems identified at assessment and extent to which health recommendations were implemented. RESULTS: Twenty-seven boys and 22 girls aged 6 months-15 years were identified who had attended at least two assessments. One-hundred and four physical and mental health needs were identified at care entry requiring further assessment or intervention. More health problems were identified for girls than boys. At care entry 15/49 of the children were not fully immunized. At review, on average 14 months later, recommendations had only been implemented in just over half of children. CONCLUSIONS: In common with previous studies this work confirms that the statutory health assessment identifies health need and health neglect that may otherwise go unrecognized. Whereas children's needs and problems were diverse, many continued to suffer health neglect in the system of public care designed to help them. In order to be effective, statutory health assessments must be a health promoting rather than disease screening exercise delivered by professionals skilled to address diverse health needs. Crucially, the heath assessment can only succeed as a tool for health advocacy if complementary to and integrated with local authority care and review.     

The needs of cancer patients and their families from rural and remote areas of Queensland

ABSTRACT: This study examines the impact of travelling for treatment on cancer patients and their families. Twenty-eight consecutive cancer patients, who were receiving radiation therapy treatment and 19 family carers, completed a structured needs assessment questionnaire and an in-depth interview.
Both patients and carers reported moderate to high levels of unmet psychological need. Carers were found to have higher levels of anxiety than patients, although both groups had higher anxiety levels than the general population. Taking more responsibility for household tasks and organising new living arrangements for the family were the most frequently identified demands of a dual burden of caring. Nearly 40% of carers reported some disruption to their schedule and half reported experiencing financial difficulties. The qualitative interviews highlight the disruption that parents and children experience under the present system, particularly in relation to the demands of family life and the need to maintain some level of continuity and security for children.     

Interprofessional Collaboration in Finnish Residential Child Care: Challenges in Incorporating and Sharing Expertise Between the Child Protection and Health Care Systems

Many children taken into care tend to be in need of psychiatric treatment as well as child protection services, and thus the professional expertise of both systems must be coordinated in their care. However, it is widely known across Europe that collaboration between child protection services and mental health services is not working well and the outcomes for looked-after children are poor. In spite of drastic need for knowledge, interprofessional collaboration between residential workers and mental health practitioners is poorly explored in international research. Most importantly, very little is known about shared expertise in multi-agency teams between these systems. Based on the analysis of interprofessional focus group interviews (eight interviews with 17 practitioners) in Finland, it is claimed that both sides have unrealistic expectations and perceptions of the other professional grouping and its facilities to help high-need children. The study also indicates that the collaboration assumes an equality of status and responsibilities between the professionals that does not always exist amongst residential child care practitioners and mental health professionals. The analysis suggests that the concept of residential child care work itself needs more empirical research to strengthen the interprofessional competencies and enhance child-centred integrated care.     

'Confidentiality smokescreens' and carers for people with mental health problems: the perspectives of professionals

This paper reports on some of the findings from a collaborative study funded by the Big Lottery and led by Crossroads Caring for Carers about carers for people with mental health problems. The protection and use of information in mental health are firmly rooted in ethics and professional codes, law and policy, as well as values and professional practice. While government initiatives have attempted to augment the role and rights of carers, policy guidance involving information sharing between professionals and carers has failed to deal with the practical dilemmas of patient confidentiality. Professional codes and training neither explore nor develop the moral and ethical ground that stands between the service user's need for privacy and the carer's need for information. Policy and training guidance on confidentiality is scattered, ambiguous, confusing for professionals and inconsistent. There is uncertainty in practice about the information that professionals may share, and many professionals do not take into account carers' rights, not least to basic information to help them care for service users. 'Confidentiality smokescreens' may sometimes lead to information being withheld from carers. Professionals sometimes find it easier and safer to say nothing. In order to explore these issues from the perspectives of professionals, 65 participants were interviewed. The sample included directors and senior staff from the health, social care and voluntary sectors. Respondents were asked to comment at length on their understanding of confidentiality and information sharing with carers. Findings highlight confidentiality smokescreens that erect barriers that limit effective information sharing; issues involving confidentiality, risk management and carers in crisis; examples of good practice; and the need for the training of professionals on confidentiality issues and the rights of carers. This paper explores the challenge of confidentiality smokescreens from the perspective of professionals, and draws out implications for professional practice and training.     

A qualitative study of the experience of caring for a person with bulimia nervosa. Part 2: Carers' needs and experiences of services and other support

OBJECTIVE: Family carers of people with mental disorders have specific needs to safeguard their own mental health. The needs of carers of individuals with eating disorders have received little attention. A focus group with carers of people with anorexia nervosa identified a number of specific needs (Haigh & Treasure [2003]. European Eating Disorders Review, 11(2), 125-141). However, there has been no published research into the needs of carers of individuals with bulimia nervosa (BN). METHOD: Twenty carers of individuals with BN were interviewed using a semistructured interview schedule. Interviews were transcribed and the texts were analyzed using a content analysis approach to identify themes. RESULTS: Carers expressed the need for more information, practical advice, guidance, and the need to talk to others about their experiences. DISCUSSION: Further research is recommended to explore how the needs expressed by carers may best be translated into services that effectively meet the requirements of both patients and carers and reduce the risk to carers' mental health.     

Perceived needs of carers of people with psychosis: An Australian longitudinal population‐based study of caregivers of people with psychotic disorders

Studies have documented the perceived needs of carers of people with psychosis but most recruitment has utilised convenience sampling resulting in limited understanding of carers’ needs. This longitudinal study was conducted within the second Australian prevalence study of psychosis, aiming to obtain generalisable findings regarding perceived needs of carers of people with psychosis. Semi‐structured interviews were conducted with 98 carers of people with psychosis recruited in the Australian prevalence study of psychosis. Seventy‐eight of the carers were reinterviewed 1 year later to measure changes in their perceived needs. Correlational and paired T tests were conducted to identify relationships between perceived needs and carer's health and well‐being, and changes in levels of perceived needs over time. Qualitative responses were structurally coded by segmentation according to the Carers’ and Users’ Expectations of Services—Carer version. Thematic analysis of common words and phrases was undertaken to identify key themes concerning carers’ perceived needs. There was minimal improvement in carers’ perceived needs over time and their needs were closely related to their perception of their own social connectedness, psychological health and quality of life. Five themes were identified: Greater involvement of carers in the treatment plan, provision of relevant information to carers, multiple biopsychosocial support for carers, well‐being and independence interventions for people with psychosis, and choice to care and alternate caring arrangements. Although policy recognises the need to support carers, findings show that focused interventions are required to address carers’ perceived needs more holistically in current mental health services. To support carers’ recovery, services need to include carers in treatment planning, and consider ways to address their needs and improve their own health and well‐being.     

Parenting children requiring complex care: a journey through time

Background Parents of children requiring complex care provide intense and demanding care in their homes. Unlike professionals who provide similar care in institutions, parents may not receive regular breaks from care giving. As a result, parents, over time, experience health and social consequences related to care giving. Respite care, one form of a break from care giving, is frequently cited as an unmet need by such parents. Method Given the paucity of literature on the impact of care giving over time, an ethnographic approach that involved in‐depth interviews, participant observation, eco‐maps, and document review was used. Parents of children requiring complex care, nurses and social workers participated in the study. Results A developmental map of care giving over time was constructed from the parents' retrospective accounts of parenting a child requiring complex care. The developmental map describes the trajectory of care for the children from infancy through young adulthood and the parents' evolving needs for respite care. Conclusion Existing literature focuses on the day‐to‐day experiences of parents, who are carers, rather than their experiences over time. As parents of children requiring complex care are providing care from infancy through the death of either child or parent, respite needs will change. This developmental map identifies how a group of parents reported these changes in care giving and their perceived needs for respite care.     

Telemedicine in a child and adolescent mental health service: participants' acceptance and utilization

Video-conferencing equipment was set up in Scotland in response to the increased pressure faced by the child and adolescent mental health services (CAMHS), and the need for specialist services to be accessible to, and harmonize with, 'mainstream' health services. Three sites were linked to the inpatient service in Edinburgh. Data were collected via questionnaires and diary logs. During a 24-month study, a total of 65 adolescents were admitted for inpatient care, of whom only five had their cases reviewed and monitored in a total of 20 teleconsultations. Adolescents and their carers involved in the study expressed great satisfaction with telemedicine and were keen to use it. Clinicians were resistant to telemedicine, with consequently low levels of utilization. Our results suggest that managers may be unwilling to re-allocate funding away from staffing, even where these costs are small and represent considerable improvements in the process of care for patients. Widespread integration of telemedicine to CAMHS is likely to be hard to achieve.     

Caring hours and possible need for employment support among primary carers for adults with mental illness: Results from an Australian household survey

Intensive unpaid caring is associated with greater likelihood of not being employed, but impacts for mental health carers specifically remain unknown. This study aimed to: (a) examine the association between caring intensity and not being employed for primary mental health carers, (b) ascertain whether this relationship differs from that for other disability carers, (c) enumerate Australian primary mental health carers with a possible need for employment support and (d) describe these carers’ unmet support needs and barriers to employment. Co‐resident, working age primary mental health (n = 137) and other disability carers (n = 821) were identified in the Survey of Disability, Ageing and Carers (collected July‐December 2015). Multiple logistic regression analyses examined associations between levels of caring intensity (1–9, 10–19, 20–39, 40+ hr/week) and not being employed. A ‘possible need for employment support’ indicator was derived from information about current employment status, caring hours, past impact of caring on employment and desire for more work or workplace accommodations. After controlling for demographic and caring role factors, mental health carers providing 40+ hr of care weekly had greater odds of not being employed compared to carers providing <10 hr (AOR 13.38, 95% CI: 2.17–82.39). For other disability carers, the odds of not being employed were also higher among those providing 20–39 hr of care (AOR 3.21, 95% CI: 2.18–4.73). An estimated 54.1% (95% CI: 43.1–64.8) of carers had a possible need for employment support, with the proportion increasing as level of caring intensity increased. Of carers who were not employed, 42.2% (95% CI: 30.3–55.0) reported a desire to work, and the main reported barrier was no alternative care arrangements or disruption to the person supported. Findings suggest that improving employment participation for mental health carers requires a greater balance between unpaid care and access to formal services for people with mental illness.     

The role of family carers in the use of personal budgets by people with mental health problems

Personal budgets aim to increase choice and independence for people with social care needs but they remain underused by people with mental health problems compared to other disability groups. The use of personal budgets may impact on families in a variety of ways, both positive and negative. This paper draws on interviews, undertaken in 2012–2013 with 18 family carers and 12 mental health service users, that explored experiences of family involvement in accessing and managing personal budgets for a person with mental health‐related social care needs. The sample was drawn from three sites across England, with additional carers being recruited via voluntary sector networks. Our findings show that for many people with severe mental health needs who lack motivation and confidence to negotiate access to personal budgets, carers may provide the necessary support to enable them to benefit from this form of social care support. We illustrate the role carers may play in initiating, pursuing and maximising the level of support available through personal budgets. However, some carers interviewed considered that personal budget funding was reduced because of practitioners’ assumptions about carers’ willingness and ability to provide support. We also report perceived tensions between family carers and practitioners around appropriate involvement in decision‐making. The study findings have implications for local authorities, practitioners and family carers in supporting the involvement of family carers in support for people with severe mental health problems.     

The effects of alcohol abuse among the new chronically mentally ill

In recent years, there has been a growing recognition of the high incidence of alcohol abuse among the new generation of chronically mentally ill. This article reports on a study that tracked a subgroup of the chronically mentally ill, those discharged from state psychiatric hospitals, through an entire community mental health aftercare system and its major auxiliary human service agencies. Those who were assessed by hospital discharge social workers as having a need for alcoholism services were found to be less likely to be referred for aftercare and to make contact with aftercare agencies post discharge; and for those with an alcoholism problem who do make contact, they generally received less service than those who did not have a need for alcoholism services. The professionals in both the mental health and alcoholism fields need to work together to better meet the needs of the chronically mentally ill with an alcohol problem.