Interactional guesstimating’: family carers’ experiences supporting profoundly intellectually disabled persons in decision-making- a constructivist grounded theory

Family carers supporting persons, living with profound intellectual and multiple disabilities in decision-making is critical, yet receives little attention. This dissertation addresses this need from family carers’ personal experiences. Background: Research shows us that family carers support approximately 80% of intellectually disabled people in their own homes and family care remains the predominant type of care and support for this group. The evidence base concerning the lives, contribution, health and wellbeing of family carers’ in addition to the persons they support, requires considerably strengthening. One such area is to understand how persons, living with profound intellectual and multiple disabilities, come to make informed decisions and how families support this activity. Aim: This research used a constructivist grounded theory approach and explored family carers’ experiences of supporting persons, living with profound intellectual and multiple disabilities, in decision-making. Methods: Following ethical approval, (March 2012) data were generated by: 1) Individual interviews with family carers (n=26) transcribed verbatim and 2) ‘A Carers Group’ (n=6) which met eight times over a twelve month period (January 2013-2014) facilitated through ‘dialogue and reflection’. 3) Field notes of meetings and carers’ diary recordings. Data Analysis consisted of initial, focused and theoretical coding of transcripts (Charmaz 2006) and memoing. Results: ‘Interactional Guesstimating: Growing confidence with uncertainty’ co-constructed with family carers indicates that supporting profoundly disabled persons in decision-making is a relational and learned experience combining intensive commitment and engagement, acquiring interactive, subjective and dynamic components of ‘knowing the person’. Described within the lenses of rights, understanding disability and personal development intense and extensive interactions represents a cyclical process of ‘Sensing a Union’, ‘Framing Representation’ and ‘Steering Activities’ required to support profoundly disabled people in decision making. Family carers’ use reflection and ‘questioning self’ to navigate these activities. Conclusion: This grounded theory evokes what Gilligan and Attanucci call the ‘care perspective’, which organises the relationship between self and other in terms of care and attachment rather than solely justice and equality. We propose a model of supporting decision-making that moves understanding of support beyond the view of ‘communication of needs and wishes as matter of fact’ or a ‘matter of entitlement’. Moreover, this approach conceptualises supporting decision-making as asserting value and meaning associated with the uniqueness and ways of expression(s) of the profoundly disabled individual. ix Contribution to new Knowledge To the best of our understanding, this is the first constructivist grounded theory of family carers’ experiences supporting persons, living with PIMD, in decision-making. This grounded theory highlights from personal experiences family carers’ success and challenges of the nebulous concept ‘supporting decision-making’. In proposing a model ‘Interactional Guesstimating’ to support people, living with a profound disability, in decision-making a progressive realisation as advocated in the ideology purported by the UN CRPD is proffered

Student nurse education and preparation for palliative care: A scoping review

Background The World Health Organisation and palliative care stakeholders recommend that healthcare workers are educated in palliative care. Provision of high-quality palliative care is fundamental to nursing practice. However, caring for palliative care patients and meeting family needs is challenging without appropriate knowledge and experience. Palliative care education and clinical skill development for undergraduate student nurses is a priority to ensure graduate nurses are equipped with the knowledge and skill to deliver safe and competent care. Methods A scoping review guided by Arksey and O’Malley’s framework was used to identify undergraduate student nurses’ palliative care education and preparation. A comprehensive literature search of five electronic databases and grey literature were conducted from January 2002 to December 2021. The aim was to review the empirical evidence and ascertain how undergraduate student nurses’ palliative care education is organised, facilitated, delivered and evaluated. Screening was performed independently by two reviewers against eligibility criteria with meetings to discuss included papers and form a consensus. Data was extracted and related to palliative care undergraduate student nurses’ education, educational model, methodology, key findings, and recommendations. Analysed and summarised data was mapped onto the four key review questions (educational models utilised, methods used to assess effectiveness, facilitators/barriers and gaps in the literature). Results 34 papers met the criteria for this review. The review highlights that undergraduate nursing palliative care education is more evident in high income countries. Limited and diverse published research existing in low- and middle-income countries. Educational models utilised were theoretical and experiential learning and educational process, early integration and multiple learning methods which were highlighted as facilitating factors. However, crowded curricula, lack of palliative care clinical placement expertise, difficulty providing clinical placement, timing and delivery of palliative care and difficulty responding to simulated environments (manikins) were perceived barriers. Nevertheless, palliative care education can ncrease knowledge, positive attitude, self-confidence and adequate preparation of undergraduate student nurses. Conclusion This review highlights that there is limited research regarding the timing and delivery of palliative care principles and practice in undergraduate student nurse education. Early integration of palliative care education impacts upon students perceived preparedness for practice and positively influences their attitudes to palliative care provision.</p

Exercising autonomy—The effectiveness and meaningfulness of autonomy support interventions engaged by adults with intellectual disability. A mixed‐methods review

Background: The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) recommend all disabled people receive support to develop their autonomy. Subsequently, evolving models for supported decision‐making and informed consent present guidance to enable autonomy support, which have relevance to people with intellectual disabilities. To date, reviews have explored how adults with intellectual disabilities exercise their autonomy or factors impacting the development of their self‐determination. This review aimed to establish the effectiveness of ‘autonomy support interventions’ engaged by adults with intellectual disability and the meaning of these interventions to this cohort. Methods: A systematic search of Cinahl Complete, PsychINFO and Scopus databases was undertaken. The search was limited to studies published between 2000 and 2020. Identified citations were uploaded to EndNote X9, duplicates removed, search outputs imported into Covidence and titles and abstracts screened. Data were extracted using an amended JBI data extraction Tool. The search strategy is reported in the adapted PRISMA flow diagram. Findings: Twelve studies were included in the mixed methods review. Critical appraisal was undertaken using the Crowe Critical Appraisal Tool. These findings identified varied and creative autonomy support interventions utilised across ordinary activities with adults with intellectual disabilities. Conclusion: This review identifies the essential components of how autonomy support interventions can enhance ordinary experiences for adults with intellectual disabilities while enabling them to develop skill sets to be more self‐directed in the choices they make

Presenting problem/conditions that result in people with an intellectual disability being admitted to acute hospitals in Ireland: An analysis of NQAIS data from 2016-2020

The wide range of health conditions and complex needs experienced by people with intellectual disability (ID) means that they are more likely to utilise acute care services in comparison with the general population. ID accounts for 1% to 3% of the world’s population and has an onset before the age of 18 years (22 years from an American perspective according to the American Association on Intellectual and Developmental Disabilities (AAIDD) 2021). ID is characterised by lifelong limitations in cognitive and adaptive functioning and experiences of social and environmental restrictions which create barriers to effective participation in daily life. With increased childhood survival rates and improved diagnostic, screening and identification, this percentage has the potential to increase in the coming decades