Peer support for people with chronic conditions: a systematic review of reviews.

BACKGROUND: People with chronic conditions experience functional impairment, lower quality of life, and greater economic hardship and poverty. Social isolation and loneliness are common for people with chronic conditions, with multiple co-occurring chronic conditions predicting an increased risk of loneliness. Peer support is a socially driven intervention involving people with lived experience of a condition helping others to manage the same condition, potentially offering a sense of connectedness and purpose, and experiential knowledge to manage disease. However, it is unclear what outcomes are important to patients across the spectrum of chronic conditions, what works and for whom. The aims of this review were to (1) collate peer support intervention components, (2) collate the outcome domains used to evaluate peer support, (3) synthesise evidence of effectiveness, and (4) identify the mechanisms of effect, for people with chronic conditions. METHODS: A systematic review of reviews was conducted. Reviews were included if they reported on formal peer support between adults or children with one or more chronic condition. Data were analysed using narrative synthesis. RESULTS: The search identified 6222 unique publications. Thirty-one publications were eligible for inclusion. Components of peer support were organised into nine categories: social support, psychological support, practical support, empowerment, condition monitoring and treatment adherence, informational support, behavioural change, encouragement and motivation, and physical training. Fifty-five outcome domains were identified. Quality of life, and self-efficacy were the most measured outcome domains identified. Most reviews reported positive but non-significant effects. CONCLUSIONS: The effectiveness of peer support is unclear and there are inconsistencies in how peers are defined, a lack of clarity in research design and intervention reporting, and widely variable outcome measurement. This review presents a range of components of peer support interventions that may be of interest to clinicians developing new support programmes. However, it is unclear precisely what components to use and with whom. Therefore, implementation of support in different clinical settings may benefit from participatory action research so that services may reflect local need.

The TinMan study: feasibility trial of a psychologically informed, audiologist-delivered, manualised intervention for tinnitus.

OBJECTIVE: To develop a manualised psychological treatment for tinnitus that could enhance audiologist usual care, and to test feasibility of evaluating it in a randomised controlled trial. DESIGN: Feasibility trial, random allocation of patients to manualised treatment or treatment as usual, and mixed-methods evaluation. Study sample: Senior audiologists, and adults with chronic tinnitus. RESULTS: Recruitment reached 63% after 6 months (feasibility pre-defined as 65%). Only nine patients (47%) were retained for the duration of the trial. Patients reported that the treatment was acceptable and helped reassure them about their tinnitus. Audiologists reported mixed feelings about the kinds of techniques that are presented to them as 'psychologically informed'. Audiologists also reported lacking confidence because the training they had was brief, and stated that more formal supervision would have been helpful to check adherence to the treatment manual. CONCLUSIONS: The study indicate potential barriers to audiologist use of the manual, and that a clinical trial of the intervention is not yet feasible. However, positive indications from outcome measures suggest that further development work would be worthwhile. Refinements to the manual are indicated, and training and supervision arrangements to better support audiologists to use the intervention in the clinic are required. Trial Registration: ISRCTN13059163.

Patients' and Clinicians' Views of the Psychological Components of Tinnitus Treatment That Could Inform Audiologists' Usual Care: A Delphi Survey.

OBJECTIVES: The aim of this study was to determine which components of psychological therapies are most important and appropriate to inform audiologists' usual care for people with tinnitus. DESIGN: A 39-member panel of patients, audiologists, hearing therapists, and psychologists completed a three-round Delphi survey to reach consensus on essential components of audiologist-delivered psychologically informed care for tinnitus. RESULTS: Consensus (≥80% agreement) was reached on including 76 of 160 components. No components reached consensus for exclusion. The components reaching consensus were predominantly common therapeutic skills such as Socratic questioning and active listening, rather than specific techniques, for example, graded exposure therapy or cognitive restructuring. Consensus on educational components to include largely concerned psychological models of tinnitus rather than neurophysiological information. CONCLUSIONS: The results of this Delphi survey provide a tool to develop audiologists' usual tinnitus care using components that both patients and clinicians agree are important and appropriate to be delivered by an audiologist for adults with tinnitus-related distress. Research is now necessary to test the added effects of these components when delivered by audiologists.

Psychological Therapy for People with Tinnitus: A Scoping Review of Treatment Components.

BACKGROUND: Tinnitus is associated with depression and anxiety disorders, severely and adversely affecting the quality of life and functional health status for some people. With the dearth of clinical psychologists embedded in audiology services and the cessation of training for hearing therapists in the UK, it is left to audiologists to meet the psychological needs of many patients with tinnitus. However, there is no universally standardized training or manualized intervention specifically for audiologists across the whole UK public healthcare system and similar systems elsewhere across the world. OBJECTIVES: The primary aim of this scoping review was to catalog the components of psychological therapies for people with tinnitus, which have been used or tested by psychologists, so that they might inform the development of a standardized audiologist-delivered psychological intervention. Secondary aims of this article were to identify the types of psychological therapy for people with tinnitus, who were reported but not tested in any clinical trial, as well as the job roles of clinicians who delivered psychological therapy for people with tinnitus in the literature. DESIGN: The authors searched the Cochrane Ear, Nose and Throat Disorders Group Trials Register; Cochrane Central Register of Controlled Trials; PubMed; EMBASE; CINAHL; LILACS; KoreaMed; IndMed; PakMediNet; CAB Abstracts; Web of Science; BIOSIS Previews; ISRCTN; ClinicalTrials.gov; IC-TRP; and Google Scholar. In addition, the authors searched the gray literature including conference abstracts, dissertations, and editorials. No records were excluded on the basis of controls used, outcomes reached, timing, setting, or study design (except for reviews-of the search results. Records were included in which a psychological therapy intervention was reported to address adults (≤18 years) tinnitus-related distress. No restrictive criteria were placed upon the term tinnitus. Records were excluded in which the intervention included biofeedback, habituation, hypnosis, or relaxation as necessary parts of the treatment. RESULTS: A total of 5043 records were retrieved of which 64 were retained. Twenty-five themes of components that have been included within a psychological therapy were identified, including tinnitus education, psychoeducation, evaluation treatment rationale, treatment planning, problem-solving behavioral intervention, thought identification, thought challenging, worry time, emotions, social comparison, interpersonal skills, self-concept, lifestyle advice, acceptance and defusion, mindfulness, attention, relaxation, sleep, sound enrichment, comorbidity, treatment reflection, relapse prevention, and common therapeutic skills. The most frequently reported psychological therapies were cognitive behavioral therapy, tinnitus education, and internet-delivered cognitive behavioral therapy. No records reported that an audiologist delivered any of these psychological therapies in the context of an empirical trial in which their role was clearly delineated from that of other clinicians. CONCLUSIONS: Scoping review methodology does not attempt to appraise the quality of evidence or synthesize the included records. Further research should therefore determine the relative importance of these different components of psychological therapies from the perspective of the patient and the clinician.

Focusing a realist evaluation of peer support for paediatric mental health.

OBJECTIVE: Mental health problems are a leading and increasing cause of health-related burden in children across the world. Peer support interventions are increasingly used to meet this need using the lived experience of people with a history of mental health problems. However, much of the research underpinning this work has focused on adults, leaving a gap in knowledge about how these complex interventions may work for different children in different circumstances. Realist research may help us to understand how such complex interventions may trigger different mechanisms to produce different outcomes in children. This paper reports on an important first step in realist research, namely the construction of an embryonic initial programme theory to help 'focus' realist evaluation exploring how children's peer support services work in different contexts to produce different outcomes in the West Midlands (UK). METHODS: A survey and preliminary semi-structured realist interviews were conducted with 10 people involved in the delivery of peer support services. Realist analysis was carried out to produce context-mechanism-outcome configurations (CMOC). RESULTS: Analysis produced an initial programme theory of peer support for children's mental health. This included 12 CMOCs. Important outcomes identified by peer support staff included hope, service engagement, wellbeing, resilience, and confidence; each generated by different mechanisms including contextualisation of psychoeducation, navigating barriers to accessing services, validation, skill development, therapeutic relationship, empowerment, and reducing stigma. CONCLUSION: These data lay the groundwork for designing youth mental health realist research to evaluate with nuance the complexities of what components of peer support work for whom in varying circumstances.

At home parent-administered dressing changes in paediatric burns aftercare: Interviews on parents' experiences of treatment.

OBJECTIVE: Paediatric burn injuries present physical and psychosocial effects for children and their parents, including disruption to family life. Some burns services in the UK enable parents to administer dressing changes at home to reduce the number of hospital visits. To date, there is no research on parents' experiences of administering dressing changes. The aim of this study was to describe parents' experiences of administering dressing changes in paediatric burns aftercare. METHODS: Semi-structured research interviews were conducted with a purposive sample of parents recruited from a paediatric burns centre in the UK. The interview addressed the initial offer of at-home dressing changes by clinicians; parental decision-making in relation to dressing changes; training and support received; and the experience of administering dressing changes, including practical and emotional considerations. Thematic analysis of the data was informed by the framework approach, including associative analysis using demographic and clinical characteristics. RESULTS: Seventeen participants were interviewed. Three themes of parents' experiences of administering dressing changes were identified including (1) Parental Identity concerning the newly undertaken responsibility and the impact on the parental role; (2) Challenges, physical or emotional, confronted or lessened by administering dressing changes; and (3) Reassurance provided by healthcare professionals and others to support parents to adopt and maintain parent-administered dressing changes. CONCLUSION: The qualitative data reported here indicates that parents want to be involved in their child's care by administering dressing changes at home, provided they receive sufficient reassurance that they are able to manage the severity of their child's burn. Parents' concerns about the effectiveness of their dressing changes lacks empirical basis, and this study provides preliminary data to support the development and evaluation of best practice guidance for parent-administered dressing changes in paediatric burns aftercare.

At home parent-administered dressing changes in paediatric burns aftercare: A survey of burns centres?" practice.

OBJECTIVE: Following paediatric burn injury, dressings are initially changed in outpatient clinics, necessitating regular visits with substantial burden for parents, children and services. This can potentially be lessened if some parents go on to administer dressing changes for their child at home. However, a lack of data regarding support for parent-administered dressing changes is present. The aim of this study was to describe current practice and views regarding at-home parent-administered dressing changes (PAD) in the UK. METHODS: An online survey was distributed to 20 paediatric burns services in England and Wales. The survey used fixed and free-text responses to collect data on whether PAD is offered and the reasons for this; patient and parent eligibility criteria; training and support; and respondents?" views on the advantages and disadvantages of PAD. Analysis comprised simple descriptive statistics and simple content analysis of free-text responses. RESULTS: Thirteen responses were received (response rate = 65%). Eleven respondents indicated their service offers PAD. Two respondents reported their service does not offer PAD due to alternative nurse outreach appointments (n = 1), and service resource limitations (n = 1), though another respondent indicated service cost savings. Twelve respondents regard PAD positively (n = 8) or very positively (n = 4). Most respondents reported that 10% or fewer parents refuse PAD when offered (n = 7). Perceived advantages of PAD included reduced travel burden (n = 9), patient better able to cope with dressing changes (n = 8), better school and work attendance for child and parent respectively (n = 6), and reduced financial impact on families (n = 4). No formal eligibility criteria for PAD are extant, though 5 respondents described informal criteria in place in their service, predominantly involving dressing frequency (n = 5), and size or complexity of wound (n = 4). CONCLUSION: The survey indicates that most paediatric burns services support PAD. However, the absence of formal eligibility criteria, and informal criteria open to interpretation, risks inequity of support received by children and their families. Further research should evaluate whether this inequity extends to variable clinical outcomes to determine what works for who and under what circumstances when supporting parents in paediatric burns aftercare.

Peer support for carers and patients with inflammatory bowel disease: a systematic review.

BACKGROUND: The support provided by people with the same condition, including inflammatory bowel diseases (IBD), has the potential to improve a range of psychosocial outcomes by allowing people with the disease to receive emotional support as well as to learn coping strategies from more experienced peers. The aim of this systematic review was to summarise the evidence on peer support interventions and their effectiveness on people with IBD. METHODS: Bibliographic databases, conference proceedings, grey literature, and clinical trial registers were searched from inception to November 2021. Comparative and single-arm studies that evaluated interventions that were solely or contained in part peer support, for people with IBD and/or their carers of any age and in any setting were included. Effectiveness was evaluated using outcomes relating to physical and psychosocial function, disease control and healthcare utilisation. Data for each outcome were tabulated and presented in a narrative synthesis. Study design specific tools were used to assess risk of bias. Study selection and risk of bias assessment were undertaken by two reviewers independently. RESULTS: Fourteen completed studies and five ongoing studies met the inclusion criteria. Substantial heterogeneity was observed in the studies in relation to the intervention type and peer support was usually part of a wider intervention. All but one study analysed the total effect of the intervention, so it was not possible to fully isolate the effect of the peer support alone. The appropriateness of outcomes and outcome measurement tools for the assessment of effects was a further key issue. As such, overall, no significant evidence of beneficial effects of peer support interventions on quality of life and other psychosocial outcomes was found. CONCLUSIONS: New randomised controlled trials designed to isolate the effects of peer support are needed to evaluate the (net) effects of peer support only. Agreement on the outcomes to be targeted, and the choice of reliable and validated measurement tools for standalone peer support interventions would provide a focus for further intervention design and evaluation. SYSTEMATIC REVIEW REGISTRATION: The protocol was accepted in the international prospective register of systematic reviews (PROSPERO CRD42020168817).

A psychologically informed, audiologist-delivered, manualised intervention for tinnitus: protocol for a randomised controlled feasibility trial (Tin Man study).

BACKGROUND: Chronic tinnitus is a common incurable condition often associated with depression, anxiety, insomnia and reduced quality of life. Within National Health Service (NHS) audiology in the United Kingdom (UK), no standard protocol currently exists for the treatment of tinnitus. Counselling is only available in less than half of audiology departments, and there is no agreed standard for what constitutes tinnitus counselling. There is substantial evidence from systematic reviews for the clinical benefit of cognitive behaviour therapy (CBT) for tinnitus delivered by clinical psychologists or psychiatrists, but no studies have sufficiently evidenced the NHS model of tinnitus care where management is increasingly being delivered by audiology professionals. In a pilot randomised controlled trial (RCT), this study aims to evaluate the feasibility of comparing a psychologically informed guidance manual developed to support audiologist management of tinnitus with usual treatment. METHODS/DESIGN: Phase 1 consisted of three development stages: (1) a scoping review to generate a comprehensive set of tinnitus counselling components, (2) a Delphi survey involving expert patients (n = 18) and clinicians (n = 21) to establish consensus on the essential core attributes of tinnitus counselling, and (3) incorporation of these elements into a manualised care protocol. In phase 2, following training in a dedicated workshop, the manualised intervention will be delivered by three experienced audiologists across three different sites. Patients (n = 30) will be randomly allocated to receive either (1) psychologically informed management from an audiologist trained to deliver the manualised intervention or (2) treatment as usual (TAU) from an audiologist who has not received this training. Quantitative outcome measures will be administered at baseline, discharge and 6-month follow-up. Qualitative interviews with participating patients and clinicians will be conducted to gather perspectives on the feasibility and acceptability of the manualised intervention. DISCUSSION: The feasibility of proceeding to a definitive RCT will be assessed via compliance with the manual, willingness to be randomised, number of eligible participants, rate of recruitment, retention and collection of quantitative outcome measures. This research offers an important first step to an evidence-based, standardised and accessible approach to tinnitus care. TRIAL REGISTRATION: ISRCTN13059163. Date of registration: 6 May 2016.

Systematic review of outcome domains and instruments used in clinical trials of tinnitus treatments in adults.

BACKGROUND: There is no evidence-based guidance to facilitate design decisions for confirmatory trials or systematic reviews investigating treatment efficacy for adults with tinnitus. This systematic review therefore seeks to ascertain the current status of trial designs by identifying and evaluating the reporting of outcome domains and instruments in the treatment of adults with tinnitus. METHODS: Records were identified by searching PubMed, EMBASE CINAHL, EBSCO, and CENTRAL clinical trial registries (ClinicalTrials.gov, ISRCTN, ICTRP) and the Cochrane Database of Systematic Reviews. Eligible records were those published from 1 July 2006 to 12 March 2015. Included studies were those reporting adults aged 18 years or older who reported tinnitus as a primary complaint, and who were enrolled into a randomised controlled trial, a before and after study, a non-randomised controlled trial, a case-controlled study or a cohort study, and written in English. Studies with fewer than 20 participants were excluded. RESULTS: Two hundred and twenty-eight studies were included. Thirty-five different primary outcome domains were identified spanning seven categories (tinnitus percept, impact of tinnitus, co-occurring complaints, quality of life, body structures and function, treatment-related outcomes and unclear or not specified). Over half the studies (55 %) did not clearly define the complaint of interest. Tinnitus loudness was the domain most often reported (14 %), followed by tinnitus distress (7 %). Seventy-eight different primary outcome instruments were identified. Instruments assessing multiple attributes of the impact of tinnitus were most common (34 %). Overall, 24 different patient-reported tools were used, predominantly the Tinnitus Handicap Inventory (15 %). Loudness was measured in diverse ways including a numerical rating scale (8 %), loudness matching (4 %), minimum masking level (1 %) and loudness discomfort level (1 %). Ten percent of studies did not clearly report the instrument used. CONCLUSIONS: Our findings indicate poor appreciation of the basic principles of good trial design, particularly the importance of specifying what aspect of therapeutic benefit is the main outcome. No single outcome was reported in all studies and there was a broad diversity of outcome instruments. PROSPERO REGISTRATION: The systematic review protocol is registered on PROSPERO (International Prospective Register of Systematic Reviews): CRD42015017525 . Registered on 12 March 2015 revised on 15 March 2016.