There but not really involved: The meanings of loneliness for people with chronic illness.

Loneliness is one of the most pressing and rapidly growing contemporary social challenges around the world. Yet we still lack a good understanding of how loneliness is constituted and experienced by those most affected. We conducted semi-structured interviews with 40 people with chronic illness who were experiencing loneliness to explore what loneliness means to them and how it impacts in their daily lives. Drawing on ideas around liquidity and performativity, we identified the relational, temporal and social layers of loneliness. Our analysis revealed the interconnectedness of chronic illness and loneliness in participants' daily lives, as well as how chronic illness shifts temporal orientation, and transforms interpersonal relationships and relationship with self, contributing to the experiences of loneliness. Though participants described the many social conditions that restricted their opportunities for social participation, giving them a sense of being left behind and spectating the social life of others, a rhetoric of loneliness as a problem and responsibility of the individual was still prominent. A narrative of the need to perform social connection emerged in the absence of meaningful social bonds with others. We argue that normative ideals of wellness and positivity circulating in chronic illness communities and society more broadly are implicated in the experience of loneliness for people with chronic conditions. We conclude by considering how more expansive representations of how to live well with chronic illness may be important in reducing personal and collective loneliness.

Examining Relational Dimensions of Service Encounters for Disadvantaged People Who Use Drugs.

INTRODUCTION: Disadvantaged groups in general, and people who use illicit drugs in particular, have consistently been found to mistrust welfare services and service providers. Therefore, knowledge is needed on the relational aspects of service design that facilitate engagement and supportive relationships with disadvantaged consumers. METHODS: We draw on qualitative interviews investigating the experiences of adults with histories of problematic drug use participating in a health justice partnership, to identify facilitators of engagement from the perspective of the consumers. FINDINGS: Common relational facilitators of engagement were identified. These included embedding the service into the local community, foregrounding proximity and relationships in the service encounters, giving consumers' agency, priorities, and concerns primacy over program aims, and safe services acting as gateways to accessing a wider range of resources, services, and programs. CONCLUSION/CONTRIBUTION: The findings suggest that the centrality of relationships may be further heightened in services seeking to assist people in positions of severe disadvantage, including the drug and alcohol arena. In addition, the findings highlight the importance of services paying greater attention to how social and community embeddedness shapes experiences of inclusion and exclusion and designing services best able to accommodate this. This research contributes to the broader understanding of consumer engagement with services by developing a more nuanced understanding of consumer refusal and resistance to service engagement. These findings are important in the development of justice programs for disadvantaged people and people who use illicit substances specifically.

Developing a model of care for substance use in pregnancy and parenting services, Sydney, Australia: Service provider perspectives.

INTRODUCTION: The absence of a clear model of care for services supporting pregnant women and mothers with substance use disorders has impeded opportunities to build an evidence base for the effectiveness of these services. Previous research has typically focused on the needs of pregnant women or mothers, as two distinct groups. This paper explores service providers' perceptions of key components of a model of care, extending from perinatal care to community-based support for up to 17 years post-delivery. A model of care is outlined and feasibility factors affecting implementation are highlighted. METHODS: Qualitative methods were adopted as a first step to informing development of the model of care. Semi-structured in-depth interviews were conducted with thirty-eight staff providing a range of substance use in pregnancy and parenting services (SUPPS) in hospital and community-based agencies, in a metropolitan health district in Sydney, Australia. Interview data was entered into NVivo and analysed using constant comparative methods. RESULTS: Guiding principles for the model of care included integrated care, harm reduction and person-centredness. Practice approaches integral to the model of care were promoting engagement with women, flexible service provision, trauma-informed care, and continuity of care. Feasibility factors influencing implementation of the model of care included fragmentation or siloing of the service network and workforce sustainability. CONCLUSIONS: A harm reduction approach was crucial for promoting engagement of women with SUPPS, particularly child protection services. A greater focus on providing ongoing community-based support for mothers also has the potential to achieve sustainable positive outcomes for women and children. Implementation of the SUPPS model of care could be undermined by threats to integration of service delivery and continuity of care. Further research is needed to explore consumer perspectives and inform the model of care as a framework for evaluation.

Care Coordination for Vulnerable Families in the Sydney Local Health District: What Works for Whom, under What Circumstances, and Why?

INTRODUCTION: Healthy Homes and Neighbourhoods (HHAN), an integrated care programme in the Sydney Local Health District (SLHD), seeks to address the needs of disadvantaged families through care coordination, as one of its components. This research aims to determine for whom, when and why the care coordination component of HHAN works, and establish the reported outcomes for clients, service-providers and partner organisations. METHODS: Critical realist methodology was utilised to undertake a qualitative evaluation of the impact of care coordination. Purposive sampling was used to select a total of 37 participants for interview, including consumers, service-providers and key stakeholders. Thematic analysis was undertaken to derive the major modes of intervention of HHAN, and data representing these elements was coded and summarised under contexts, mechanisms and outcomes. RESULTS: Analysis indicates that care coordination has a positive impact on clients' sense of independence, self-awareness and outlook on life. Trust and favourable interpersonal relations were identified as major underlying mechanisms for a successful client-provider working relationship. The identified modes of intervention facilitating positive consumer outcomes included accessibility, flexibility and service navigation. Persistent siloes in health and systemic resistance to collaboration was seen to hinder effective care delivery. CONCLUSIONS: This study suggests that a care coordination model may be effective in engaging disadvantaged families in healthcare, assist them in navigating the health system and can lead to beneficial health and social outcomes. Successful implementation of care coordination requires flexible programme design and experienced and skilful clinicians to fulfil the care coordinator role. There is a need to appreciate the negative impact that the complex and siloed health system can have on disadvantaged families.