Aligning with the flow of control: A grounded theory study of choice and autonomy in decision making practices of people with intellectual disabilities

Purpose: Choice and autonomy are recognized as values facilitating genuine self determination. Subsequently greater understanding of these concepts in decision-making practices of adults with intellectual disabilities is required. Aims: The twofold aim of this research study was to ascertain the core concern (most important issue) for adults with intellectual disabilities as they make choices and exercise autonomy and to develop a theory explaining how these adults attempt to resolve their core concern. Methods: This research study undertaken in a single organization in the Republic of Ireland applied classic-grounded theory methods. Participants included twelve adults who were attending day services and accessing a variety of other organizational services. Interviews were undertaken, between January 2012 and September 2013, in different contexts on up to 4 occasions (46 interviews). Data analysis utilized concurrent processes of constant comparative analysis. Results: The main issue of concern for these participants was ‘control’ in environments that were controlling of them and they responded by ‘aligning with the flow of control’ explained by how they framed control, emotionally connected and adjusted in compliance situations. Conclusions: This theory offers a conceptual delineation of the way adults with intellectual disabilities manage the daily tensions and harmonies in decision-making

Navigating the process of ethical approval : a methodological note

Classic grounded theory (CGT) methodology is a general methodology whereby the researcher aims to develop an emergent conceptual theory from empirical data collected by the researcher during the research study. Gaining ethical approval from relevant ethics committees to access such data is the starting point for processing a CGT study. The adoption of the Universal Declaration on Bioethics and Human Rights (UNESCO, 2005) is an indication of global consensus on the importance of research ethics. There is, however, a wide variation of health research systems across countries and disciplines (Hearnshaw 2004). Institutional Research Boards (IRB) or Research Ethics Committees (REC) have been established in many countries to regulate ethical research ensuring that researchers agree to, and adhere to, specific ethical and methodological conditions prior to ethical approval being granted. Interestingly, both the processes and outcomes through which the methodological aspects pertinent to CGT studies are agreed between the researcher and ethics committee remain largely ambiguous and vague. Therefore, meeting the requirements for ethical approval from ethics committees, while enlisting the CGT methodology as a chosen research approach, can be daunting for novice researchers embarking upon their first CGT study. This article has been written in response to the main challenges encountered by the author from an Irish perspective when seeking ethical approval to undertake a CGT research study with adults with intellectual disabilities. The emphasis on ethical specifications meant that the CGT author had to balance ethical principles and rules with issues of ‘not knowing before one is in a position to know’ and ‘trusting in emergence’. Ethical prescription challenged the emergence inherent within CGT methodology. While acknowledging the need for ethical requirements, this paper is intended in particular to illuminate methodological challenges which may confront novice classic grounded theorists, and offer some insight into the practicalities of balancing the requirements of ethics committees with the requirements of the CGT methodology. The author demonstrates that the meticulous nature of the CGT methodology must not be overshadowed when meeting the requirements of ethics committees. The author seeks to encourage novice classic grounded theorists to approach ethics committees with research proposals which reflect the fundamental principles of CGT methodology while challenging experienced classic grounded theorists researchers to stand firm on ethics committees supporting such proposals

Knowledge, attitudes and practices in the provision of nutritional care

The nutritional care of patients is one of the primary responsibilities of all registered nurses (Persenius et al, 2008). A poor nutritional status can lead to malnutrition, which can have serious consequences for an individual’s quality of life (Field and Smith, 2008). This paper commences with an introduction to the concept of nutrition, provides an overview of nutritional guidelines and nutritional screening tools which identify those at risk of malnutrition. It reviews the literature on nurses’ knowledge, attitudes and practices in the provision of nutritional care and debates challenges and opportunities encountered to help nurses ensure adequate patient nutrition

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

A scoping review on the psychosocial interventions used in day care service for people living with dementia

Background Adult Day care centres provide an important aspect of care provision through all phases of the dementia illness from diagnosis to the end of life (Dabelko HI 2008) supporting the well-being of both older people living with dementia and their care partners. Services within adult day care settings are designed to provide biopsychosocial health benefits to participants as well as care partner respite. Objective To examine research studies, literature reviews and grey literature and identify and map the literature on psychosocial interventions used in day care services for older people living with dementia and chart their use, evaluation and outcomes. The research review question is “what are the psychosocial interventions used in day care service for older people living with dementia?” Psychosocial interventions are important non-pharmacological interventions which support people’s wellbeing. Methods Inclusion/Exclusion criteria were identified and guided the search strategy. Participants were people aged 60 years and over living with dementia attending day care services. The use of psychosocial interventions for this cohort was the focus of the review. Databases were searched (Cochrane Reviews, CINAHL, Embase, Medline EBSCO, Medline Ovid, Medline PubMed, PsycINFO, Scopus, Open Grey, Lenus and WHO Global Index Medicus databases) using keywords/terms with Boolean operators from 2011 to 2023. Rayyan was used to extract and manage the data. Results The findings present a narrative and charting of the data from the 45 papers that met the review criteria, and this data is mapped onto the five objectives. Within this review, interventions were grouped into five broad types: nature (n = 6 papers), memory/cognitive (n = 11 papers), social (n = 17 papers), animal (n = 4 papers), or physical/sensory (n = 7 papers) based interventions. Conclusions This review has illustrated the wide variety in the types, range and facilitation of psychosocial interventions within adult day care services. This review highlights the potential benefits of these interventions. However, findings must be considered in the context that many were provided as brief intervention studies with little evidence of continuation after the study and further research is required given the complex and diverse range of interventions. Results will be of interest to practitioners planning to implement or evaluate psychosocial interventions used in day care services for older people living with dementia.</p

Exploring the experiences of women living with metastatic breast cancer [MBC]: A systematic review of qualitative evidence

Purpose Metastatic breast cancer [MBC] is the leading cause of cancer death in women globally with no cure. Women diagnosed with MBC endure a catastrophic upheaval to multiple aspects of their life and a radically transformed future landscape. Evidence suggests that the provision of care for women living with metastatic breast cancer is inadequate, socially isolating and stigmatising. To date, this topic has received little research attention. To increase understanding of the experiences of women living with MBC, a synthesis of current evidence is required. This paper presents a review of qualitative evidence on women’s experiences of MBC. Methods A qualitative evidence synthesis [QES] was conducted to synthesise primary qualitative research on the experiences of women living with MBC. Searches were performed of electronic databases Medline, Medline Ovid, PsycINFO, Psych articles, PubMED, CINAHL Complete, Scopus and grey literature databases. The methodological quality of the included studies was appraised using a modified version of the Critical Appraisal Skills Programme [CASP]. Title, abstract, and full-text screening were undertaken. A ‘best fit’ framework approach using the ARC [Adversity, Restoration, Compatibility] framework was used to guide data extraction and synthesis. Confidence in the findings was assessed using the Grading of Recommendations Assessment, Development and Evaluation, Confidence in the Evidence from Reviews of Qualitative research [GRADE-CERQual]. Results 28 papers from 21 research studies containing 478 women’s experiences of living with MBC were deemed suitable for inclusion in this qualitative evidence synthesis. Findings are presented in a new conceptual framework RAAW [adapted from ARC] for women living with MBC under themes: Reality, Adversity, Adjustment and Wellbeing. Findings revealed that a diagnosis of MBC impacted every aspect of women’s lives; this is different to a diagnosis of early breast cancer. An overarching theme of lack of support extended across various facets of their lives. A lack of psychological, emotional, and psychosocial support was evident, with a critical finding that models of care were not fit for purpose. Deficits included a lack of information, knowledge, inclusion in shared decision-making and MDT support, specifically the need for palliative care/oncology support access. Some women living with MBC wanted to be identified as having a chronic illness not a life-limiting illness. Culture and socioeconomic standing influenced the availability of various types of support. The impact of treatment and symptoms had an adverse effect on women’s quality of life and affected their ability to adjust. Conclusion This review synthesised the qualitative literature on the experiences of women living with MBC. The ARC framework used in the synthesis was adapted to develop a revised conceptual framework titled RAAW to represent the evidence from this review on experiences for women living with MBC; Reality & Adversity: A diagnosis of MBC; Adjustment: Living with MBC; Wellbeing: Awareness, meaning, engagement [RAAW; MBC]. </p

Leadership in intellectual disability practice: design, development, and evaluation of a programme to support practice

Background Intellectual disability services have and continue to experience changes in service provision. This has an implication for leadership in practice as the quality of leadership has a direct influence on staff practice and care provided. Aim To design, deliver, and evaluate a leadership programme for nurse and social care managers in Ireland. Design An accredited programme was designed based on evidence from literature, practice, and national expertise. A cross-sectional survey was used to collect information on the attitudes and behaviour of participants before commencing and after completing the programme. Data from the questionnaires were analysed using SPSS and open-ended questions were analysed using content analysis. Setting Intellectual disability services. Participants 102 participants completed the programme and survey. Methods Pre-post survey and reported using the CROSS guidelines. Results Participants’ expectations were rated highly, and all items scored higher in the post-survey. Qualitative data was overall positive regarding opportunities for more time to work through each aspect of the programme. The key learning was through the forum day where participants shared their group projects. Conclusions Overall, the programme was positively evaluated and through engaging with the programme participants’ perceptions moved from seeing leadership as mostly task-oriented to realising that qualities such as good communication, person-centredness, advocacy, supporting, role modelling, and empowering are key to leadership.</p