Anita Franklin

Listening and Responding? Children's Participation in Health Care within England

This article examines recent health policy developments in England in relation to childrens rights under Article 12 and 13 of the United Nations Convention on the Rights of the Child (UNCRC). It draws on practice and research literature to explore evidence regarding: childrens participation both within decisions about their own care and concerning the development of health services, their access to mechanisms that allow them a voice, the provision of and need for accessible information, and factors which prevent or facilitate childrens participation. The paper does not explore in detail issues concerning childrens consent or competence to participate.

Multi‐agency transition services: greater collaboration needed to meet the priorities of young disabled people with complex needs as they move into adulthood

Purpose – Drawing on a wider study about the effectiveness and costs of different models of multi‐agency transition services, this paper aims to present new evidence on the ways in which such services meet the priorities and concerns of young people identified in previous research.Design/methodology/approach – The evidence is based on qualitative interviews with 130 managers and staff in five transition services across England, and a quantitative survey of parents and young people receiving these services (pre‐transition), or having received the services in the last‐two years (post‐transition). In total, 110 pre‐transition and 33 post‐transition parents, and 73 pre‐transition and 24 post‐transition young people, completed questionnaires. Statistical analysis included calculating frequencies and mean values for the responses that measured met and unmet need, and qualitative results were analysed thematically. The consequence of, and reasons for, the low response rate to the family survey are also discussed...

Children with albinism in African regions: their rights to ‘being’ and ‘doing',

BackgroundAlbinism is an inherited condition with a relatively high prevalence in populations throughout sub-Saharan Africa. People with oculocutaneous albinism have little or no pigment in their hair, skin and eyes; thus they are visually impaired and extremely sensitive to the damaging effect of the sun on their skin. Aside from the health implications of oculocutaneous albinism, there are also significant sociocultural risks. The impacts of albinism are particularly serious in areas that associate albinism with legend and folklore, leading to stigmatisation and discrimination. In regions of Africa those with albinism may be assaulted and sometimes killed for their body parts for use in witchcraft-related rites or to make ‘lucky’ charms. There is a dearth of research on the psychosocial aspects of albinism and particularly on how albinism impacts on the everyday lives of people with albinism.DiscussionThere is a growing recognition and acceptance in Africa that people with albinism should be considered disabled. Thomas’s social-relational model of disability proposes it is essential to understand both the socio-structural barriers and restrictions that exclude disabled people (barriers to doing); and the social processes and practices which can negatively affect their psycho-emotional wellbeing (barriers to being). In this article, we combine a social model of disability with discussion on human rights to address the lacuna surrounding the psychosocial and daily experiences of people with albinism.ConclusionThrough using this combined framework we conclude that the rights of people with albinism in some regions of Africa are not being enacted. Our debate highlights the need to develop a holistic concept of rights for children and young people with albinism which sees human rights as indivisible. We illuminate some of the specific ways in which the lives of children with albinism could be improved by addressing ‘barriers to being’ and ‘barriers to doing’, at the heart of which requires a shift in attitude and action to address discrimination.

Enablers of help-seeking for deaf and disabled children following abuse and barriers to protection: a qualitative study

Research internationally has highlighted the increased vulnerability of deaf or disabled children to abuse and the frequently inadequate response of services. However, first-hand accounts of deaf or disabled children have rarely been sought. This paper reports selected findings from one of the first studies exploring deaf and disabled children’s experiences of help-seeking following maltreatment. Innovative and sensitive research methods were employed to support ten deaf or disabled people (children and adults) to take part in guided conversations. The study identifies three enablers of help-seeking of deaf or disabled children: the capacity of adults to detect abuse and respond to disclosures, supportive relationships or circumstances which facilitate disclosure; and, for Deaf children, access to registered interpreters. Barriers to protection related to these are also discussed. Recommendations directed at policy makers, practitioners and families include: education and awareness raising amongst practitioners, children, parents and carers; addressing deaf and disabled children’s social isolation; providing comprehensive support services that address the needs of the child holistically; ensuring the voice of the child is heard; routine access to registered interpreters for Deaf children within mainstream and specialist services and measures to address disablism at a local and institutional level.

Enablers of help‐seeking for deaf children and disabled children following abuse and barriers to protection: a qualitative study

Research internationally has highlighted the increased vulnerability of deaf or disabled children to abuse and the frequently inadequate response of services. However, first-hand accounts of deaf or disabled children have rarely been sought. This paper reports selected findings from one of the first studies exploring deaf and disabled children’s experiences of help-seeking following maltreatment. Innovative and sensitive research methods were employed to support ten deaf or disabled people (children and adults) to take part in guided conversations. The study identifies three enablers of help-seeking of deaf or disabled children: the capacity of adults to detect abuse and respond to disclosures, supportive relationships or circumstances which facilitate disclosure; and, for Deaf children, access to registered interpreters. Barriers to protection related to these are also discussed. Recommendations directed at policy makers, practitioners and families include: education and awareness raising amongst practitioners, children, parents and carers; addressing deaf and disabled children’s social isolation; providing comprehensive support services that address the needs of the child holistically; ensuring the voice of the child is heard; routine access to registered interpreters for Deaf children within mainstream and specialist services and measures to address disablism at a local and institutional level.

A Concept Analysis in relation to the Cultural Competency of the Palliative Care Workforce in Meeting the Needs of Young People from South Asian Cultures

ABSTRACTObjective:Our aims were to report an analysis of the concept of cultural competency and to explore how the cultural competency of the palliative care workforce impacts the holistic care of young people with palliative care needs from South Asian cultures. METHOD Using keywords, we searched the online databases MEDLINE, CINAHL, ScienceDirect, and PubMed from January of 1990 through to December of 2016. Some 1543 articles were retrieved, and inclusion and exclusion criteria were applied. A total of 38 papers were included in the concept analysis. The data were analyzed using Coads (2002) adapted framework based on Rodgerss (1989) evolutionary concept analysis, focusing on the attributes, antecedents, consequences, and related terms in relation to culturally competent care. A model case of culturally competent care was also constructed. RESULTS The literature provides evidence that the concept of culturally competent care is a complex one, which is often expressed ambiguously. In addition, there is a paucity of research that involves service users as experts in defining their own needs and assessing their experiences related to cultural care. SIGNIFICANCE OF RESULTS Cultural care should be integral to holistic patient care, irrespective of a persons race or ethnicity. There is an urgent need to involve young BAME patients with palliative care needs and their families in the development of a robust tool to assess cultural competency in clinical practice.

The impact of a sibling's life-limiting genetic condition on adult brothers and sisters

It is estimated that rare diseases affect the lives of over three million people in the United Kingdom. Of these, a significant proportion are children and young people with genetic life‐limiting or life‐shortening conditions. This study used a qualitative approach with in‐depth semi‐structured interviews to explore the experiences of 10 adult siblings of a baby diagnosed with Trisomy 13 (Patau syndrome) or Trisomy 18 (Edward syndrome). Findings illustrate that parental grief from the time of their childs diagnosis onward is also experienced by siblings. Although young adults may have conflicting feelings as a bereaved sibling, there is evidence that the experience impacts on their world views and their attitudes about prospective and expectant parenthood. The study highlights the importance of providing siblings with short‐term and long‐term support from the time of their brothers or their sisters diagnosis onward and provides new understanding about benefit of professional and peer support in helping young adults develop resilience and coping strategies.

719 Enablers of help-seeking and protection from abuse for deaf and disabled children: a qualitative study

Background Research internationally has highlighted the increased vulnerability of disabled children to abuse and the often poor response of services. Very few studies, however, have explored disabled children’s experiences of help-seeking. This paper reports selected findings from a study, commissioned by the National Society for the Prevention of Cruelty to Children, examining the help-seeking experiences of deaf and disabled children who had been abused. The paper focuses on enablers of help-seeking and protection from abuse Methods The research aimed to better understand the experiences of abused deaf and disabled children and identify enablers and barriers, in terms of disclosure, recognition and response, within the child protection system. Interviews were conducted with 10 children and adults abused in childhood, including some who came into contact with child protection services and some who did not. The definition of a referral having been made and recorded by the relevant statutory services was based on the participant’s recollection; this was not something we were in a position to verify. Our starting point was always to acknowledge the participant’s perception of events. A ‘dialogic approach’ was used to promote participant empowerment in giving informed consent. Results Four key enablers were identified by participants. These include children’s resistance to abuse, the capacity of adults to detect abuse and respond to disclosures, supportive relationships or circumstances which facilitate disclosure and, for Deaf children, access to registered interpreters. Conclusions The implications of the findings for policy and practice are highlighted and recommendations include: education and awareness raising amongst practitioners, children and parents; addressing deaf and disabled children’s social isolation; providing comprehensive support services that address the needs of the child holistically; ensuring the voice of the child is heard; routine access to registered interpreters for Deaf children within mainstream and specialist services and measures to address disablism at a local and institutional level.

Enablers of help-seeking for deaf children and children with disabilities following abuse and barriers to protection : a qualitative study

Research internationally has highlighted the increased vulnerability of deaf or disabled children to abuse and the frequently inadequate response of services. However, first-hand accounts of deaf or disabled children have rarely been sought. This paper reports selected findings from one of the first studies exploring deaf and disabled children’s experiences of help-seeking following maltreatment. Innovative and sensitive research methods were employed to support ten deaf or disabled people (children and adults) to take part in guided conversations. The study identifies three enablers of help-seeking of deaf or disabled children: the capacity of adults to detect abuse and respond to disclosures, supportive relationships or circumstances which facilitate disclosure; and, for Deaf children, access to registered interpreters. Barriers to protection related to these are also discussed. Recommendations directed at policy makers, practitioners and families include: education and awareness raising amongst practitioners, children, parents and carers; addressing deaf and disabled children’s social isolation; providing comprehensive support services that address the needs of the child holistically; ensuring the voice of the child is heard; routine access to registered interpreters for Deaf children within mainstream and specialist services and measures to address disablism at a local and institutional level.

Enablers of help-seeking and protection from abuse for deaf and disabled children: A qualitative study

Research internationally has highlighted the increased vulnerability of deaf or disabled children to abuse and the frequently inadequate response of services. However, first-hand accounts of deaf or disabled children have rarely been sought. This paper reports selected findings from one of the first studies exploring deaf and disabled children’s experiences of help-seeking following maltreatment. Innovative and sensitive research methods were employed to support ten deaf or disabled people (children and adults) to take part in guided conversations. The study identifies three enablers of help-seeking of deaf or disabled children: the capacity of adults to detect abuse and respond to disclosures, supportive relationships or circumstances which facilitate disclosure; and, for Deaf children, access to registered interpreters. Barriers to protection related to these are also discussed. Recommendations directed at policy makers, practitioners and families include: education and awareness raising amongst practitioners, children, parents and carers; addressing deaf and disabled children’s social isolation; providing comprehensive support services that address the needs of the child holistically; ensuring the voice of the child is heard; routine access to registered interpreters for Deaf children within mainstream and specialist services and measures to address disablism at a local and institutional level.