Care coordination for children with a disability or developmental difficulty: Empowers families and reduces the burden on staff supporting them.

BACKGROUND: Almost half of all children and young people with a disability or developmental difficulty (DDD) have complex disability and are likely to require multidisciplinary care. Care coordination (CC) aims to provide a single point of contact and a coordinated service, thereby improving care experiences, meeting unmet needs and empowering families. The impact of CC for children with DDD was evaluated. METHOD: Between May and August 2020, an in-depth evaluation of CC in Gwent, South Wales was conducted. Of 284 families who accessed CC, 38 were approached, as well as 177 health and social care professionals based at Serennu, Nevill Hall and Caerphilly Children's Centres. Nine families and 14 professionals completed semi-structured interviews. Interview transcripts were analysed using thematic analysis. RESULTS: This evaluation found perceived improvements in families' abilities to navigate, organize and understand care and increased parental engagement. Professionals observed fewer missed appointments, and both professionals and families described CC as a source of holistic support, including practical advice regarding housing, finances and emotional support. Professionals commented on CC easing pressure on their service. Potential limitations included restricted staff capacity and the role not being defined clearly for families and professionals. CONCLUSIONS: At a time of increased stress for families of children with DDD, and scarce resources to support them, care coordinators play a vital role in assisting families to engage with health services, while feeling supported and empowered. CC reduces the burden on professionals, while enhancing relationships with families.

Dignity and respect during pregnancy and childbirth: a survey of the experience of disabled women.

BACKGROUND: Despite the increasing number of women with disability globally becoming pregnant, there is currently limited research about their experiences. A national survey of women's experience of dignity and respect during pregnancy and childbirth raised concerns about the possibility of women with disability having unequal care with overall less choice and control. To address this further we conducted a study to explore the experiences of dignity and respect in childbirth of women with disability. METHODS: The study involved a self-selecting, convenience sample of 37 women who had given birth in the United Kingdom and Ireland and had completed an internet-based survey. Women were identified through online networks and groups of and for disabled parents and for people with specific medical conditions. Data were collected using an online survey tool. Survey data were analysed using descriptive statistics. Thematic analysis was used for open questions. RESULTS: Despite generally positive responses, just over half of the group of women expressed dissatisfaction with care provision. Only 19% thought that reasonable adjustments or accommodations had been made for them (7/37). When reasonable adjustments were not in place, participants' independence and dignity were undermined. More than a quarter of women felt they were treated less favourably because of their disability (10/37, 27%). At all points in the pregnancy continuum more than a quarter of women felt their rights were either poorly or very poorly respected; however this was greatest in the postnatal period (11/35, 31%). In addition, more than half of the women (20/36, 56%) felt that maternity care providers did not have appropriate awareness of or attitudes to disability. CONCLUSIONS: Women's experiences of dignity and respect in childbirth revealed that a significant proportion of women felt their rights were poorly respected and that they were treated less favourably because of their disability. This suggests that there is a need to look more closely at individualised care. It was also evident that more consideration is required to improve attitudes of maternity care providers to disability and services need to adapt to provide reasonable adjustments to accommodate disability, including improving continuity of carer.

Physically Disabled Adults' Perceptions of Personal Autonomy: Impact on Occupational Engagement.

Despite the prominence of the concept of autonomy in the UN Convention on the Rights of Persons With Disabilities and within disability theory, the relevance of autonomy to occupational engagement is unclear. Using a qualitative, narrative approach, eight adults with significant physical disabilities engaged in iterative interviews exploring their life history and perception of autonomy in daily life. Interviews were transcribed verbatim and themed. Key themes that emerged were that participants valued autonomy differently; their perception of their own personal autonomy influenced both occupational choices and the meaning derived from occupational engagement. While some participants actively sought occupations in which they could make decisions, others preferred more supportive environments, yet all participants avoided situations in which their autonomy was undermined. Awareness of an individual's values regarding autonomy could assist occupational therapists to both select appropriate occupations for intervention and discuss the meaning derived from occupations, thereby enhancing client-centered practice.

Effective communication: Core to promoting respectful maternity care for disabled women.

OBJECTIVE: Previous research highlights that disabled women have less choice, control and respect of their dignity during pregnancy, childbirth and parenting. The experience of dignity and respect during pregnancy and childbirth for those with physical and sensory disability in the UK and Ireland is explored. DESIGN, SETTING AND PARTICIPANTS: Narrative, semi-structured telephone and Skype interviews were conducted with ten disabled women in the UK and Ireland. Interviews were audio-recorded and transcribed verbatim. Intra- and inter-thematic analysis was undertaken, beginning with a process of open coding. As themes developed, a process of constant comparison was used. FINDINGS: The key finding is that effective communication with women was perceived to best respect the women's dignity in childbirth. This meant enabling women to feel heard, enabling women to make informed decisions about their care and providing individualized care. The single most important factor that enabled this communication was continuity of carer. KEY CONCLUSIONS: The factor that most promoted maternity care that was perceived to be respectful was effective communication. This is not so different in other parts of the world, or for non-disabled women, however care providers should be particularly careful to enable good communication with disabled women.

Independence: proposing an initial framework for occupational therapy.

BACKGROUND: The concept of independence is common in occupational therapy theory and practice but has rarely been clearly defined or conceptualized within in occupational therapy literature and there seems to be no standard definition. This can result in ambiguity, which potentially jeopardizes client-centred practice. AIM: This paper proposes an occupational therapy independence framework (OTIF) that synthesizes the range of characterizations of independence in a practically useful and occupation-centred manner. METHODS: A review of literature, clinical experience, doctoral research and conversations with occupational therapists and disabled people, in particular those involved in a disability activism group and people with physical disabilities, has led to the development of the OTIF. RESULTS: Independence and interdependence, as characterized in the OTIF, occur when an individual exerts choice over occupational performance and can engage in occupations in a manner acceptable to the individual. Interdependence results when occupations are performed with another person whereas independence involves solitary occupational performance. Dependence typically results from inability to choose occupations or a mismatch between performance capacity and environmental factors. SIGNIFICANCE: The OTIF has the potential to clarify the conceptualization of independence within occupational therapy theory and practice. This initial proposal is presented to stimulate debate and discussion.

"My view that disability is okay sometimes clashes": experiences of two disabled occupational therapists.

AIMS: While disability is the focus of much attention in occupational therapy, there has been little attention paid to disability within the profession. Disabled therapists not only bring valuable perspectives on disability, but also pose important challenges to taken-for-granted assumptions about impairment and disability within the profession. At the same time, their cultural beliefs and values may clash with core assumptions of the profession. METHODS: This study analyses interview data from two disabled occupational therapists, part of a larger study with cultural minority therapists. Semi-structured interviews explored their experiences of professional practice in the context of societal belief in the superiority of non-disabled and "normal" ways of doing and being. MAJOR FINDINGS: Some cultural values of participants clashed with the values and beliefs of their profession, particularly concerning independence. Negative attitudes of colleagues and managers were the key barriers to practice. The responsibility for bridging the disabled/non-disabled cultural divide rested with the disabled therapists, exacerbating inequity. Nonetheless, these therapists believed their disability experiences had advantages for practice. CONCLUSIONS: Disabled therapists may be required to engage in invisible work to communicate across cultural differences, and to educate others. Respectful openness to difference could enhance the practice competence of both disabled therapists and their non-disabled colleagues. This demands critical reflexive attention to ableism within the profession.