Navigating Ever-Changing Seas: Ageing with an Intellectual Disability

Introduction As a population, the ageing trajectory for people with intellectual disability is nearing that of the general population. Given that many individuals with intellectual disability continue to live into their middle adult years with someone they identify as family/whānau – this has implications for all parties. There is an emerging body of literature that identifies some of the challenges faced by this largely ‘hidden’ population. Whilst research about future planning is not necessarily a new phenomenon for this specialist field, the nature of ageing with intellectual disability, the characteristics and dynamics of caregiving and receiving within family/whānau, and the relationship this has to decision-making about ageing, has received limited attention. Hence the aim of this thesis was to explore perspectives about getting older and future planning for people with an intellectual disability and their family/whānau. Method The qualitative design for this study was based on Charmaz’s Constructivist Grounded Theory. This methodology was informed by the axiology of what is ethical (transformative paradigm), and the ontology of relativism both of which underpinned the interpretive constructivist epistemology embedded in this grounded theory approach. Non-probability and snowball sampling were used to recruit people with intellectual disability aged 40 years or older, living with someone they identified as family/whānau and whom they nominated to co-participate in this research. Memo writing, interviews, concurrent data collection and theoretical sampling are features of a grounded theory approach that were used across participant groups. Photo elicitation was also used with participants who have intellectual disability to enhance and promote their contribution and inclusion in the research, and also served as a key theoretical sampling approach. Constant comparison data analysis was undertaken between and across participant groups. Results A total of 19 people with intellectual disability and 28 family/whānau were interviewed and the findings revealed a lifelong engagement with caregiving and receiving that was influenced by factors both internal and external to the living situation. Key features of this engagement were identified: Transitions across the individual and collective life courses were denoted in terms of decisions about the member with intellectual disability remaining at home and the subsequent changing roles, responsibilities and expectations within, and between, all in the network of care. Three categories exemplified this journey, namely; Riding the Waves, Shifting Sands – Changing Tides and Uncovering Horizons. Whilst these may appear to be linear, the perspectives and experiences expressed by participants both explored and demonstrated a reflexive interrelationship between these which is posited in Navigating Ever-Changing Seas: An Emergent Theoretical Model. This informs and illustrates the cyclical, evolving and reciprocal nature of caregiving relationships over time, identifies the influences thereto and the impact these have on the person with intellectual disability and those in their family/whānau system of care in terms of their view and experience of ageing. Discussion Navigating Ever-Changing Seas: An Emergent Theoretical Model provides a platform to understand the nature of caregiving and receiving for people who are ageing with intellectual disability and those they identify as family/whānau. The relationship of family/whānau who have a member with intellectual disability is seen to be complex, dynamic, and trans-generational. Each person has an experience and perspective of their identity and relationship with others which has been informed by the past and current philosophies of the caregiving network itself, as well as the wider, external community and socio-political context across the lifespan. As the territory for each person and life-stage changes over time, so does the constructed map (individually and collectively): This impacts upon the perspective and prospect of ageing, future planning, respective and projective roles and responsibilities. It is pivotal that these perspectives do not remain hidden as recognising them will enable and mediate the development of inclusive policies for each member of this caregiving network in regards to practice, research, service planning, development and delivery

COVID‐19: Evolving challenges and opportunities for residential and vocational intellectual disability service providers

The sustainability of service provision continues to be a challenge in the field of intellectual disability due to changes in delivery as part of intermittent or ongoing lockdown requirements during the COVID‐19 global pandemic. There are many facets to this that may have temporary or permanent impacts not only on the sector, but ultimately for service access and outcomes for people with intellectual disability themselves. This narrative literature review identifies both opportunities for, and impacts on, service providers across jurisdictions. These are explored in terms of the effects that suspension, adaptation, continuity or the cessation of service delivery have had, and those that are projected. Such impacts include, but are not limited to, changes in service access and delivery, employment roles and responsibilities, financial sustainability and the need to diversify the services and supports provided and how they are delivered. The relevance of these impacts for family carers and people with intellectual disability is also discussed. Nonetheless, there have also been opportunities which inform the shape of service delivery and pandemic planning into the future

Navigating Ever-Changing Seas: Ageing with an Intellectual Disability

Introduction As a population, the ageing trajectory for people with intellectual disability is nearing that of the general population. Given that many individuals with intellectual disability continue to live into their middle adult years with someone they identify as family/whānau – this has implications for all parties. There is an emerging body of literature that identifies some of the challenges faced by this largely ‘hidden’ population. Whilst research about future planning is not necessarily a new phenomenon for this specialist field, the nature of ageing with intellectual disability, the characteristics and dynamics of caregiving and receiving within family/whānau, and the relationship this has to decision-making about ageing, has received limited attention. Hence the aim of this thesis was to explore perspectives about getting older and future planning for people with an intellectual disability and their family/whānau. Method The qualitative design for this study was based on Charmaz’s Constructivist Grounded Theory. This methodology was informed by the axiology of what is ethical (transformative paradigm), and the ontology of relativism both of which underpinned the interpretive constructivist epistemology embedded in this grounded theory approach. Non-probability and snowball sampling were used to recruit people with intellectual disability aged 40 years or older, living with someone they identified as family/whānau and whom they nominated to co-participate in this research. Memo writing, interviews, concurrent data collection and theoretical sampling are features of a grounded theory approach that were used across participant groups. Photo elicitation was also used with participants who have intellectual disability to enhance and promote their contribution and inclusion in the research, and also served as a key theoretical sampling approach. Constant comparison data analysis was undertaken between and across participant groups. Results A total of 19 people with intellectual disability and 28 family/whānau were interviewed and the findings revealed a lifelong engagement with caregiving and receiving that was influenced by factors both internal and external to the living situation. Key features of this engagement were identified: Transitions across the individual and collective life courses were denoted in terms of decisions about the member with intellectual disability remaining at home and the subsequent changing roles, responsibilities and expectations within, and between, all in the network of care. Three categories exemplified this journey, namely; Riding the Waves, Shifting Sands – Changing Tides and Uncovering Horizons. Whilst these may appear to be linear, the perspectives and experiences expressed by participants both explored and demonstrated a reflexive interrelationship between these which is posited in Navigating Ever-Changing Seas: An Emergent Theoretical Model. This informs and illustrates the cyclical, evolving and reciprocal nature of caregiving relationships over time, identifies the influences thereto and the impact these have on the person with intellectual disability and those in their family/whānau system of care in terms of their view and experience of ageing. Discussion Navigating Ever-Changing Seas: An Emergent Theoretical Model provides a platform to understand the nature of caregiving and receiving for people who are ageing with intellectual disability and those they identify as family/whānau. The relationship of family/whānau who have a member with intellectual disability is seen to be complex, dynamic, and trans-generational. Each person has an experience and perspective of their identity and relationship with others which has been informed by the past and current philosophies of the caregiving network itself, as well as the wider, external community and socio-political context across the lifespan. As the territory for each person and life-stage changes over time, so does the constructed map (individually and collectively): This impacts upon the perspective and prospect of ageing, future planning, respective and projective roles and responsibilities. It is pivotal that these perspectives do not remain hidden as recognising them will enable and mediate the development of inclusive policies for each member of this caregiving network in regards to practice, research, service planning, development and delivery

Quality indicators for a community-based wound care centre : an integrative review

The purpose of this review was to identify the role and contribution of community-based nurse-led wound care as a service delivery model. Centres increasingly respond proactively to assess and manage wounds at all stages – not only chronic wound care. We conducted an integrative review of literature, searching five databases, 2007–2018. Based on inclusion and exclusion criteria, we systematically approached article selection and all three authors collaborated to chart the study variables, evaluate data, and synthesise results. Eighteen studies were included, representing a range of care models internationally. The findings showed a need for nurse-led clinics to provide evidence-based care using best practice guidelines for all wound types. Wound care practices should be standardised across the particular service and be integrated with higher levels of resources such as investigative services and surgical units. A multi-disciplinary approach was likely to achieve better patient outcomes, while patient-centred care with strong patient engagement was likely to assist patients' compliance with treatment. High-quality community-based wound services should include nursing leadership based on a hub-and-spoke model. This is ideally patient-centred, evidence-based, and underpinned by a commitment to developing innovations in terms of treatment modalities, accessibility, and patient engagement. © 2020 Medicalhelplines.com Inc and John Wiley & Sons LtdThis study was supported by The Nurse Maude Association, Christchurch, New Zealand, a community‐based nursing service in New Zealand. We acknowledge the contribution of the following Nurse Maude Association staff: Mary‐Anne Stone (MPH), Senior Manager of Research, Innovation and Aged Residential Care. Cathy Hammond (MA–Clinical Nursing), Clinical Nurse Specialist – Specialist Wound Service. Denise Brankin (RN, PGDipHSc), Service Manager, Specialty Nursing Services. Gill Coe (BA), Research Officer.creativ

The COVID-19 pandemic experiences of people with intellectual and developmental disabilities (PWIDD) through a nursing lens: Global Perspectives

The COVID-19 pandemic had significant impacts on the lives of PWIDD globally (Doody & Keenan, 2021). This study explored life experiences of PWIDD from the perspective of nurses in the USA, Canada, Australia, New Zealand, Ireland and the UK. This study aimed to conduct international research to ascertain the experiences of PWIDD one year into the Covid 19 pandemic, as observed by nurses.An online 52-item questionnaire adapted from a study by Desroches et al (2021) was completed by 369 nurses across three continents between March and May 2021. Descriptive statistics were used to rank the challenges in providing nursing care for PWIDD. Manifest content analysis was applied to open-ended responses. Ethical approval was granted for the study by the Institutional Ethics Review Board at one of the coauthor’s educational establishments. Quantitative results revealed many pandemic issues for PWIDD, including limitations to, socialisation with family/friends, day programming/educational activities and also challenges to ensuring sufficient staffing to provide adequate nursing care. Qualitative content analysis of open-ended survey responses revealed issues relating to accessing healthcare and also adapting to and understanding rapidly changing public health guidelines. This study reveals that the pandemic exposed the health inequalities experienced by PWIDD is a global phenomenon. Access to care for PWIDD in health and social care settings were further impaired by the pandemic. The importance of having high quality nursing care and meaningful activity and socialization for overall well being of PWIDD during the pandemic was evident in the study's findings. This study benefited significantly from an intercontinental collaboration made possible due to great advances in virtual communication during the pandemic resulting in the potential development of a global nursing research collaboratory to research issues relating to nursing care needs of PWIDD