Living with frailty and haemodialysis: a qualitative study

In the haemodialysis (HD) population, the prevalence of frailty, “a multidimensional syndrome of decreased physiological reserve leading to increased vulnerability to minor health stressors” [1], is 34% [2], compared with 7.7% in older adults in the general population [3]. People receiving HD are particularly susceptible to developing frailty irrespective of chronological age; this is associated with an increased risk of mortality [4]; hospitalisation [5]; falls [6] and loss of independence and quality of life [7, 8].

HD treatment was originally intended for a more robust demographic with lower levels of multimorbidity [9]. Debate about appropriate care for a frailer population has begun to emerge [10], yet there are relatively few studies of interventions which might improve outcomes, care, and experience for this vulnerable group [11‐14]. Studies examining the impact of frailty on people receiving HD have primarily used observational designs. To identify and/or develop interventions and strategies to improve experiences and outcomes for this group, a better understanding of their holistic needs is essential.

While several qualitative studies have focused upon the experience of older adults in relation to specific aspects of care or HD treatment [17‐21], there has been little examination of the wider experiences of people who are living with frailty, irrespective of their age. This paper reports on a qualitative exploration of the lived experiences of people receiving HD who are frail, which aimed to identify what factors should inform the care of this group.

Twenty six of 37 people approached were recruited. One participant died prior to data collection, leading to a final sample of 25. Ten participants were recruited from satellite unit 1, 9 from the hospital-based unit and 6 from satellite unit 2. Participants’ mean age was 69 ± 10 years, 13 were female and 13 were White British and 10 Asian or Asian British (see Table 2 for full sample characteristics). Interviews predominantly took place at the HD unit (n = 23).

To present the findings, we begin with the background context of participants’ perceptions of the factors that contribute to frailty (illustrative quotes are presented in Table 3). Then, drawing upon the socioecological model, we describe participants’ experiences of the consequences of frailty – at different levels (Table 4). Thirdly, we present participants’ accounts of how they cope with their frailty, and its consequences, highlighting unmet needs (Table 5). Figure 1 outlines how each of the themes map to each level within the socioecological model.

This study aimed to explore the lived experiences of people receiving HD who are frail and to identify which factors should inform the holistic care of this group. To summarise, the main factors which participants described as contributing to frailty were weight loss, weakness, exhaustion, pain, and sleep disturbance arising from multiple long-term conditions. These issues magnified the losses and challenges associated with HD treatment by necessitating more frequent and burdensome interactions with health and social care organisations, which did not always prioritise their needs. Participants were increasingly reliant upon family members and vulnerable to loneliness due to diminishing social support and community participation. In response, some participants were able to adapt to their circumstances by adopting creative problem solving and embracing aids and adaptations which promoted independence but for others avoidance, vigilance and resignation were their primary coping strategies. Reinforced by family and healthcare professional relationships, these led to escalating dependence and a reduced ability to engage in self-management behaviours and decision-making. Overall, the findings suggest that interventions and care pathways that work to address the factors identified across multiple socioecological levels may result in broader improvements in both experience and outcomes for this group.

The experiences of this patient group who are receiving HD and living with frailty echo – to an extent – findings from studies of older people living with end-stage kidney disease and those living with frailty in the general population [16, 17, 21, 29, 30]. These studies highlight the impact of symptoms [17, 30], multiple long-term conditions [21], a resulting loss of social life [17, 30] and increasing reliance on family members [17, 21, 29, 30] and coping primarily via acceptance [17, 29, 30], problem solving but also psychological avoidance [17]. Our findings extend these by illustrating that HD and frailty are both disruptive life events that, when combined, have a cumulative impact which profoundly unsettles people’s expected life course, irrespective of age. By drawing upon the socioecological model to present our findings, we demonstrate that the consequences of living with HD and frailty were evident at multiple levels and we highlight the corresponding unmet needs of this patient group. The multi-level consequences and needs underline the potential importance of embedding a more holistic assessment in kidney services which could identify unmet needs at each level; for example, at the individual level, assessing symptom and medication management, nutrition, function and mobility and psychological wellbeing; and at the interpersonal level, assessing amount and type of social support. Our results suggest that such an assessment may be particularly useful upon admission to hospital and, for those who are considering dialysis options, in the outpatient setting, to inform decision-making and prompt the introduction of treatment strategies which may prevent or allay decline.

One form of holistic assessment relevant to this population is Comprehensive Geriatric Assessment (CGA). CGA is a multidimensional, multidisciplinary process which identifies holistic care needs and leads to the development of an integrated and co-ordinated care plan [13]. In older people within the general population, when compared to acute general medical care, those who receive CGA are more likely to be alive and in their own homes on discharge and at 3 to 12 months' follow‐up [31]. CGA is not yet a routine part of kidney services. Barriers to implementation are not well established within the literature, but include uncertainty about how to identify and target suitable recipients [18, 32], lack of time and knowledge [18, 12], concern about participant burden [18] and inconsistent access to a broad multi-disciplinary team [12]. Whilst it is not yet known if CGA leads to improved outcomes in people with chronic kidney disease, existing evidence suggests that CGA can successfully be integrated, in a modified format, into routine kidney care, leading to improved experience, identification of geria tric impairments, and initiation of discussion around treatment decisions [11, 12, 33‐35]. These modified versions of CGA are typically completed by one or two assessors (usually a nurse and/ or nephrologist) who conduct a streamlined version of the CGA. The content of the assessment varies, but most commonly focuses upon mobility and function, falls, nutrition, cognition and the presence of anxiety and depression [11, 12, 33‐35]. Our results indicate that widening this assessment to identify additional needs (relating to symptom management, physical inactivity, self-management support, benefit assistance and coping with loss, grief, and loneliness) would be of particular help to the frail HD population. In addition, involving other speciality services in these holistic assessments, and potentially utilising telehealth and virtual multi-disciplinary team meetings could potentially overcome issues of duplication and inconsistency in care that participants described.

At the interpersonal level, family were providing extensive support, invariably leading to conflict between a family’s desire to ‘protect’ and a participant’s desire to avoid being a ‘burden’, which increased avoidant behaviours and limited their independence. These findings echo previous research that highlights the influence of family support on individual’s confidence and ability to manage their health [16‐18, 21]. To address this, kidney services could develop better mechanisms to support family and friends caring for those with frailty, including the development of family-based supportive interventions, and greater involvement of family members in decision-making, acknowledging of course, that the person must remain at the centre of their care [9, 36‐38].

The findings of this study underline that assessment and intervention at the individual and interpersonal levels may be insufficient in producing sustained improvements in outcomes and care for this group. At an organisational level, lack of time, continuity and accommodations for multi-morbidity and complexity within services led to an experience of transactional care, which did not always meet patients’ needs. Furthermore, deferential attitudes towards healthcare professionals led to participants under-reporting issues important to them, such as symptoms and falls, and the undermining of the therapeutic alliance needed for effective self-management. Previous research has highlighted similar experiences in the general HD population [16, 18]. Our findings highlight the importance of person-centred care, which focuses upon the individuals experience of their illness, but we note the difficulties of achieving this in the context of a pressurised health and social care system [38]. A focus upon guideline-driven care, which prioritises clinical targets, has been linked with discordant treatment recommendations and communication between care providers and patients [17, 37, 38]. Efforts to streamline and enhance the co-ordination of care across sectors has been linked to increases in function, patient, carer and HCP satisfaction and reduced institutionalisation, our findings call for work to enhance the integration between kidney services and other health and social care services [39].

This study emphasises the dynamic interactions between the factors contributing to frailty and its consequences, strategies for managing frailty and unmet needs, at multiple socioecological levels. The development of close collaborative links between kidney services and other secondary and primary care specialities, community groups and integrated care systems may also, therefore, facilitate developing and evaluating multi-level interventions, which could lead to better outcomes and experiences than interventions solely targeting the individual level [40, 41]. For example, a more sustained impact may be achieved by combining: a holistic assessment and management plan; family support interventions; implementation of person-centred care pathways; increased links with groups and services; enhanced accessibility of/to community environments; and reform to state financial support systems. In addition, while it is difficult for interventions to address rapport directly, particularly given the pressures on staff, a more integrated approach to care could increase consistency and time and, in turn, this may enhance trust, empathy and rapport.

To our knowledge, this study is the first to explore the experiences of people living with frailty and receiving HD. A key strength was the use of a validated frailty risk-stratification measure to identify those living with frailty. Despite this, the study inclusion and exclusion criteria potentially limited the transferability of our findings. Recruiting participants living with severe frailty (CFS 7) was challenging, although the proportions included are comparable to the HD populations [42]. A further limitation of this study was the exclusion of non-English speakers, however the inclusion of an ethnically diverse range of participants is a particular strength of this work. Patient and public involvement during the design, data collection, analysis, and interpretation phases of the study also helped to ensure both rigour and credibility.

The lead author is a physiotherapist working with people with long-term conditions, and this may have shaped the data collection process and the themes constructed. Some of the participants were also known to her in her therapy role, which may have influenced their responses. She maintained a reflexive journal throughout the study, to document reflections on her potential influence on the research process and the interpretation of the findings, and to create an ‘audit trail’ of analytical decisions. The involvement of N.R.(a senior renal dietitian), M.H. (a diabetes specialist nurse), and H.E. (a social scientist) in the analysis and interpretation of the data enabled us to reflect upon the level of agreement and similarity between coders and to ensure that analysis and interpretation was grounded in the data. To enhance credibility, we discussed our findings with the wider multidisciplinary research team and our PPI group.

In conclusion, frailty and multiple long-term conditions magnify the losses and challenges associated with HD treatment, demanding more frequent and burdensome interactions with health and social care services for the individual and their families. The implementation of CGA into kidney services, designing health and social care systems which facilitate the development of more person-centred approaches and relationships, greater inclusion of family members and enhancing opportunities for community participation may all improve outcomes and experience. However, an approach which addresses all these areas, in addition to wider public health interventions, may have greater sustained impact.