Physical health problems in people with psychosis: The issue for informal carers

Background

Poor mortality rates in adults living with psychotic disorders are widely documented (Hayes, Marston, Walters, King, & Osborn, 2017; Hjorthøj, Stürup, McGrath, & Nordent, 2017) and current evidence suggest a 15- to 20-year reduced life expectancy in patient groups with severe mental health disorders such as psychosis, compared with the general population (Dutta, Murray, Allargyce, Jone, & Boydell, 2011; Hayes et al., 2017; Nielsen, Uggerby, Jensen, & McGrath, 2013). The reduced mortality rates and higher morbidity are attributable to several factors including an excess of physical health conditions such as cardiovascular disease (Laursen, Nordentoft, & Mortensen, 2014), diabetes (Vancampfort et al., 2016), metabolic syndrome (Vancampfort et al., 2015) and respiratory illness (Filik, Purdy, Gale, & Gerrett, 2006), which are considered largely preventable with modifiable risk factors. The iatrogenic effects of pharmacological treatments (e.g. appetite changes, weight gain, lipid abnormalities) (Rummel-Kluge et al., 2010; Ventriglio, Gentile, Stella, & Bellomo, 2015), in association with poorer lifestyle habits (e.g. sedentariness, smoking, poor nutrition) (Cook et al., 2014; Stubbs et al., 2018) and reduced access to services, optimal treatments and timely interventions, are also key factors in yielding poorer health outcomes and mortality in people with psychosis (Moore, Shiers, Daly, Mitchell, & Gaughran, 2015; Newcomer & Hennekens, 2007).

Many adults living with psychotic disorders are closely supported by informal caregiving relationships and input from carers can play a significant role in optimising positive illness outcomes. Support from informal carers is associated with facilitating significant reductions in levels of patient relapse and hospitalisation (Norman, Lewis, & Marshall, 2005) and increasing patient engagement in services and prescribed treatments (Stowkowy, Addington, Liu, Hollowell, & Addington, 2012). More recently, evidence suggests that patients with carer support compared with peers without can also achieve better rates of mortality (Ran et al., 2016; Reininghaus et al., 2015).

While initiatives to improve physical health outcomes in adults with psychosis remain an increasing priority for health providers (National Institute for Health and Care Excellence (NICE), 2014; Royal College of Psychiatrists, 2013), hitherto, these efforts have predominately focused on upskilling clinical staff in problem identification, early and preventive interventions, alongside strategies to promote and incentivise healthy lifestyle changes in patient groups (Alvarez-Jimenez et al., 2010; Bailey, Gerada, Lester, & Shiers, 2012; Gaughran et al., 2013). Despite the important contribution of caregiving relationships to facilitating positive outcomes for patients with psychosis, and a call for greater consideration of carers in promoting physical healthcare interventions for patients (Fung, Gardner-Sood, 2012; Happell, Platania-Phung, Gaskin, & Stanton, 2016), carer perspectives on physical health issues in patient groups have been largely ignored by service providers and policy makers. Achieving a better understanding of patient physical health in psychosis, through the perspective of those who are closest to them, may offer a helpful pathway to improving physical health outcomes in people with psychosis.

Aims

In a sample of informal carers of adults with psychosis, this study sought to examine carer experiences of physical health issues in their relative and links with the caregiving relationship. The study was embedded within the broad methodological framework of qualitative exploratory research, which lends itself well to the study of areas that lack a literature (Stebbins, 2001).

Methods

The project was approved by the National Health Service (NHS) Trust audit and evaluation committee (reference number: PSYAUD15/10). It employed a cross-sectional design using focus groups and individual semi-structured interviews. Participants were carers of adults with psychotic disorders and recruited from two NHS carer support groups. One group was open to carers of patients being treated in an adult community mental health psychosis service, while the second group was open to carers of patients who were or had been previously been inpatients of a specialist ward for people with treatment resistant psychosis. Potential participants were informed about the study through a team newsletter and poster. No data were collected on any carers who were aware of the project but opted to not participate. Participants were invited to take part in the focus group. They were also given the option of completing an individual interview if they wished to be involved but were unable to attend the group interview.

The individual and group-based interviews were completed in NHS settings. The interview protocol was developed by the authors and informed by a review of the current literature spanning mental health caregiving experiences and patient physical health, and consultation with carers. The schedule comprised questions that were intentionally designed to be broad and facilitative of carers’ personal accounts and perspectives. The questions focused on carers’ experiences of physical health issues faced by the relative they care for, how they relate and interact with their caregiving role and how they cope. No pilot interviews were undertaken before commencing the interviews.

The focus groups were facilitated by the first two authors (J.O. and S.H.), a postgraduate and graduate psychologist, respectively. The two individual interviews were facilitated by the postgraduate psychologist. The first author (J.O.) was employed in one of the recruiting services, but unknown to participants, the second author (S.H.) had no relationship with either service. Both researchers had clinical and research experience of psychosis, working with carers and undertaking qualitative methods of research. Participants were informed about who the researchers were, their academic and clinical interest in working with issues related to psychosis, and what their role would be in facilitating the focus groups and interviews. The focus groups lasted approximately 70 minutes and the individual interviews ran for approximately 45 minutes. All interviews were digitally recorded. Participants were compensated 10 British pounds for their time. No repeat interviews were undertaken with participants.

Analyses

The recorded interviews were transcribed verbatim by the first two authors (J.O. and S.H.). Transcripts were not returned to participants for comments. The transcripts were thematically analysed in accordance with principles from Braun and Clarke (2006). All themes were derived from the data. All data collection and coding were undertaken independently. The analysis commenced with a familiarisation process comprising repeated reading of the transcripts. Following detailed study of each line of text, the primary codes were extracted, which were initially organised around prima facie similarities and differences and then subsequently into potential categories. After the completion of coding, the researchers held regular discussions to reach consensus on the identified themes.

Results

In total, 16 carers participated in the study. Two carers participated in individual interviews and the remainder attended one of the two focus groups that were held. No consenting participants dropped out of the study. In accordance with accepted principles (Bowen, 2008), the researchers felt that data saturation had been achieved with the recruited sample.

The sample age ranged between 35 and 79 years, with an uneven split between male and female participants with females representing 75% of the sample. Approximately two-thirds identified their ethnicity as White (n = 10, 63%) and married (n = 10; 63%). Participants were predominately the parents of the adult with psychosis (n = 12, 75%) and one-third lived with the person they cared for (n = 5, 31%). Just over one-third of participants were employed (n = 6 36%) or in retirement (n = 6; 38%). Participants reported spending an average of 30 hours each week in contact with their relative with psychosis. In terms of the person living with psychosis, their mean age was 42 years (range = 29–72 years) and the mean length of illness as reported by the carer was 18 years (range = 7–41 years). See Table 1 for sample characteristics.

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Table 1.

Socio-demographic characteristics of carers of adults with psychosis.

Characteristics	n	%
Gender
Female	12	75
Male	4	25
Marital status
Cohabiting	2	12.5
Married	10	62.5
Single	4	25
Age (years)
35–45	3	19
46–56	4	25
57–67	3	19
>68	6	38
Ethnicity
Asian Chinese	1	6
Black African	2	13
Black Caribbean	2	13
White	10	63
Not Specified	1	6
Occupation
Homemakers	2	13
Part-time employed	3	19
Retired	6	38
Self-employed	3	19
Student	1	6
Unemployed	1	6
Relationship to service user
Parent	12	75
Partner	2	12.5
Sibling	2	12.5

Themes

Analyses of interview transcripts identified five main themes comprising the following: (1) ubiquity of physical health problems in psychosis, (2) gaps in service provision for those living with mental and physical health problems, (3) carers’ role in responding to service gaps, (4) difficult conversations and (5) impact on carer health.

Discussion

This study sought to explore the subjective experiences of carers of adults with psychotic disorders who also have physical health problems. Data extracted from individual and group-based interviews yielded five key themes. These reflected the ubiquity of physical health problems in psychosis, the gaps in mental and physical health service provision for individuals with psychosis, a carer’s role in responding to service gaps and unmet need, the difficult conversations that carers have or seek to avoid with their relative over any matters related to their physical health and the impact of patient physical health on carer health status and well-being.

The reports detailing the diverse physical health problems experienced by participants’ relatives with psychosis were consistent with the wider literature on poor physical health functioning in severe mental health populations (Hayes et al., 2017). Likewise, carers’ reports of observing unhelpful and frustrating gaps in service provision for relatives with psychosis and physical health problems was consistent with current literature (Burns, Greenwood, Kendrick & Garlan, 2000) and served to reinforce ongoing initiatives to introduce parity in approaches to delivering optimal mental and physical health care (NHS England, 2016; NICE, 2014). We noted earlier that carers of people with psychosis can play an integral role in facilitating improved recovery outcomes, including provision of emotional and financial support, and advocacy (Lester et al., 2011). The savings made by the government from the unpaid work of informal carers are estimated at 1.24 billion each year (Schizophrenia Commission, 2012). Our current findings extend this body of evidence to highlight carers’ role in supporting their relative’s physical health and the disappointment and frustrations commonly experienced when faced with gaps in service provision. The results indicated that carers were often required to or felt the need to step in and assume control of a situation to ensure their relative’s physical health needs were met. They would try to compensate for the negative sequelae of the illness on their relative’s thinking and behaviour (e.g. lack of motivation, disorganised thinking) that would present in parallel with gaps in service provision. Thus, for example, carers would escort a relative to a fitness class or provide regular wake up calls and reminders for attending scheduled physical health appointments. Participants could cite different examples of when they had not been involved or were unable to compensate for service gaps (i.e. a telephone reminder) and the negative effect it had on their relative’s care. The current findings offer further support for the policy initiatives, and service and treatment guidelines seeking greater integration of physical and mental health care (NICE, 2014), and highlight gaps that can exist between recommended care and current practice (Das-Mushi, et al., 2016).

Many of the reports offered by carers had drawn direct links between the onset of physical health problems in their relative, specifically diet and weight gain issues, and commencement of anti-psychotic medication treatments. This would be consistent with the current literature that increased appetite and glucose tolerance can be known side-effects in some medications for some patients (De Hert et al., 2011; Rummel-Kluge et al., 2010).

Carers described links between their experiences of emotional dysfunction and a poorer state of their relative’s physical health. They reported feeling anxious and frightened about the future, and over what would become of their relative. They reported experiencing anxiety and fear about the future and what would become of their relative were positive changes in their physical health profile not to occur. It is possible that participant anxiety (and other indices of emotional disturbance) is likely to be negatively affected by the broader focus within clinical and research settings on physical health issues in severe mental health and regular reports of reduced life expectancy in patients. That carers report high levels of emotional distress, is well established across different carer populations and illness phases (Gupta, Isherwood, Jones, & Van Impe, 2015; Poon, Harvey, Mackinnon, & Joubert, 2016); however, the specific links between anxiety and patient physical health problems is new and deserving of further exploration.

Although the study focused on patient physical health, it seems important to note that for most participants, physical and mental health was inextricably linked with a mutually dependent relationship. For carers, conversations about physical health would always (or should always) include conversations about their mental health. This view is also consistent with findings from interviews with a generic sample of mental health carers (Happell et al., 2016).

Clinical implications

Although preliminary, the current findings offer important clinical implications. In support of previous calls (e.g. Cree et al., 2015, Giacco, Dirik, Kaselionyte, & Priebe, 2017), healthcare professionals should aim to work in greater partnership with carers on physical health issues and acknowledge their role, perspective and contributions to optimising patient health outcomes.

In practical terms, it may be helpful for professionals to ask carers about the type of assistance they provide their relative with in addressing physical health issues, the resource implications and what support, if any, they may require or benefit from. Given the impact, poor patient physical health may have on carer emotional functioning, carers might benefit from direct enquiry about concerns they have about patient health status and offered relevant support or signposting to services to address any negative emotional impact (e.g. anxiety) it may have on their functioning. Carers are having conversations about physical health with their relatives with psychosis and engaging in different supportive behaviours (e.g. providing reminders about appointments and accompanying them, responding to indicators of ill health; talking about nutrition and diet). These are conversations and behaviours which typically require careful navigation and ongoing awareness of and sensitivity to patient symptomatology and shifting presentation. They can also be difficult and impact on the rapport shared with their relative and quality of the caregiving relationship. Carers might benefit from opportunities to optimise their patient communication and engagement skills. This might be particularly beneficial for carers in the early illness phases, when the illness and its sequelae are new. Interventions to support carers’ well-being and outcomes remain consistent with treatment recommendations for psychotic disorders (e.g. NICE, 2014).

Limitations

The sample, although diverse in the types of caring relationships represented was predominately represented by parental carers, which impacts the generalisability of the findings to other carer sub-groups. While the predominance of parental carers, particularly mothers, remains a common picture in clinical and research settings (Onwumere et al., 2017; Ruggeri et al., 2017), the subjective experiences and related themes that might be argued to predominate in other carer groups (e.g. child carers, siblings, partners) might have been overlooked. For example, we know that partner carers can often experience difficulties and confusion in distinguishing between caregiving and romantic partner roles, which may have implications in their experience of physical health difficulties in their partner (Jungbauer, Wittmund, Dietrich & Angermeyer, 2004). Although the results are informative and can be understood in the context of existing literature, the findings, however, were derived from a small sample of only 16 participants. Consequently, caution is required in the interpretation and wider generalisation of the findings. In addition, our recruitment pathways were limited to NHS funded carer support groups. It is possible, therefore, that participants might represent those most or least affected by their carer role, including areas related to patient physical health and, consequently, their experiences may not reflect those of carers who were not attending support groups.

While focus groups are regarded as a helpful methodology to initiate topic discussion and exchange of views in a group setting (Bryman, 2008), the more in-depth exploration of individual narratives will be missed. The current findings, however, were designed to offer an initial understanding of the issues experienced by carers and serve as a helpful start to undertaking further focused and hypothesis-driven investigations. Given the diversity of perspectives on physical health issues in severe mental health (e.g. Gronholm, Onagbesan, & Gardner-Sood, 2017), the inclusion of the patient and healthcare professional perspectives (e.g. Lester, Tritter, & Sorohan, 2005) would have strengthened the study, enabled the triangulation of findings and more nuanced and broader clinical implications.

Conclusion

Although derived from a modest sample, our current findings highlight the issues about patient physical health and service provision reported by carers of people with psychosis. The findings also highlight the impact that carer concerns about patient physical health can have on carer well-being. The results speak to the importance of increasing greater awareness in physical and mental health staff of the different roles and expertise carers can have in supporting improved physical health outcomes for patient groups.