scholarly journals Psychosocial support for families of children with neurodisability who have or are considering a gastrostomy: the G-PATH mixed-methods study

2020 ◽  
Vol 8 (38) ◽  
pp. 1-126
Author(s):  
Gillian M Craig ◽  
Eva Brown Hajdukova ◽  
Celia Harding ◽  
Chris Flood ◽  
Christine McCourt ◽  
...  
Keyword(s):  
Mixed Methods ◽  
Health Services ◽  
Willingness To Pay ◽  
Health Care Professionals ◽  
Psychosocial Support ◽  
Clinical Care ◽  
Research Programme ◽  
Mixed Methods Study ◽  
Care Pathways ◽  
The Cost

Background Evidence reviews recommend consistent and structured support for children with neurodisability and their caregivers in care pathways in which professionals recommend a gastrostomy feeding tube. To date, and to our knowledge, no research has shown how these recommendations have been implemented. Objectives The objectives were to describe different exemplar models of psychosocial support and provide an estimate of their resources and costs. Design This was a mixed-methods study involving (1) a web-based survey, (2) a qualitative, collective case study of psychosocial support provision in four services and (3) an estimate of costs and preference through a willingness-to-pay study. Setting Four service configurations in different locations in England and Scotland. Participants Participants were staff who responded to a survey (n = 67) and interviewees (staff, n = 58; parents/children, n = 29). Findings Psychosocial support was rarely formalised or documented; it was delivered by different members of the multidisciplinary team, rather than by designated staff, and it was often integrated into appointments dominated by clinical care. Parents expressed different needs for support but reported little opportunity to discuss emotional aspects. Psychologists were not routinely involved and, in general, families were underserved by psychosocial services. Professionals constructed families’ need for psychosocial support in terms of their own roles and the management of risk. Mechanisms for integrating and delivering support were identified, including models of care that linked community and tertiary health services and integrated health and education through pooled budgets. Although generally valued by both staff and parents, peer-to-peer parent support was not consistently offered. Barriers included concerns about confidentiality and appropriately matching parents. Parents participated as members of a feeding committee at one site. Three analytical constructs described the provision of psychosocial support: ‘hidden work’, expressing emotional vulnerability and negotiations around risks and values. The cost-of-support study found that there was a mean of 2.25 appointments (n = 8 parents or carers) over the previous 12 months. The cost of health-care professionals’ time spent on providing psychosocial support ranged from £0.00 to £317.37 per child per year, with an average cost of £76.42, at 2017 prices. In the willingness-to-pay study the median rank of enhanced support, involving the opportunity to see a psychologist and parental peers, was significantly higher than that of usual care (n = 96 respondents, both carers and professionals, who completed rating of the service; p < 0.001). Limitations It proved difficult to disseminate a national survey, which resulted in a small number of returns, and to cost the provision of psychosocial support, which we designated as ‘hidden work’, owing to the lack of recording in clinical systems. Moreover, estimates were based on small numbers. Conclusions Parent interviews and the willingness-to-pay study demonstrated a preference for enhanced psychosocial support. The study suggests that there is a need for services to formally assess families’ needs for psychosocial support to ensure that provision is planned, costed and made explicit in care pathways. Personalised interventions may assist with the targeting of resources and ensuring that there is an appropriate balance in focus on both clinical care and psychosocial support needs in relation to and following treatment. Future work More work is needed to develop tools to assess families’ needs for psychosocial support and the effectiveness of training packages to strengthen team competency in providing support. Funding This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 8, No. 38. See the NIHR Journals Library website for further project information.

scholarly journals Drivers of ‘clinically unnecessary’ use of emergency and urgent care: the DEUCE mixed-methods study

2020 ◽  
Vol 8 (15) ◽  
pp. 1-256
Author(s):  
Alicia O’Cathain ◽  
Emma Knowles ◽  
Jaqui Long ◽  
Janice Connell ◽  
Lindsey Bishop-Edwards ◽  
...  
Keyword(s):  
General Practice ◽  
Mixed Methods ◽  
General Practitioner ◽  
Health Service ◽  
Health Services ◽  
Focus Groups ◽  
Emergency Departments ◽  
Help Seeking ◽  
Mixed Methods Study ◽  
Coping Capacity

Background There is widespread concern about the pressure on emergency and urgent services in the UK, particularly emergency ambulances, emergency departments and same-day general practitioner appointments. A mismatch between supply and demand has led to interest in what can be termed ‘clinically unnecessary’ use of services. This is defined by the research team in this study as ‘patients attending services with problems that are classified as suitable for treatment by a lower urgency service or self-care’. This is a challenging issue to consider because patients may face difficulties when deciding the best action to take, and different staff may make different judgements about what constitutes a legitimate reason for service use. Objectives To identify the drivers of ‘clinically unnecessary’ use of emergency ambulances, emergency departments and same-day general practitioner appointments from patient and population perspectives. Design This was a sequential mixed-methods study with three components: a realist review; qualitative interviews (n = 48) and focus groups (n = 3) with patients considered ‘clinically unnecessary’ users of these services, focusing on parents of young children, young adults and people in areas of social deprivation; and a population survey (n = 2906) to explore attitudes towards seeking care for unexpected, non-life-threatening health problems and to identify the characteristics of someone with a tendency for ‘clinically unnecessary’ help-seeking. Results From the results of the three study components, we found that multiple, interacting drivers influenced individuals’ decision-making. Drivers could be grouped into symptom related, patient related and health service related. Symptom-related drivers were anxiety or need for reassurance, which were caused by uncertainty about the meaning or seriousness of symptoms; concern about the impact of symptoms on daily activities/functioning; and a need for immediate relief of intolerable symptoms, particularly pain. Patient-related drivers were reduced coping capacity as a result of illness, stress or limited resources; fear of consequences when responsible for another person’s health, particularly a child; and the influence of social networks. Health service-related drivers were perceptions or previous experiences of services, particularly the attractions of emergency departments; a lack of timely access to an appropriate general practitioner appointment; and compliance with health service staff’s advice. Limitations Difficulty recruiting patients who had used the ambulance service to the interviews and focus groups meant that we were not able to add as much as we had anticipated to the limited evidence base regarding this service. Conclusions Patients use emergency ambulances, emergency departments and same-day general practitioner appointments when they may not need the level of clinical care provided by these services for a multitude of inter-related reasons that sometimes differ by population subgroup. Some of these reasons relate to health services, in terms of difficulty accessing general practice leading to use of emergency departments, and to population-learnt behaviour concerning the positive attributes of emergency departments, rather than to patient characteristics. Social circumstances, such as complex and stressful lives, influence help-seeking for all three services. Demand may be ‘clinically unnecessary’ but completely understandable when service accessibility and patients’ social circumstances are considered. Future work There is a need to evaluate interventions, including changing service configuration, strengthening general practice and addressing the stressors that have an impact on people’s coping capacity. Different subgroups may require different interventions. Study registration This study is registered as PROSPERO CRD42017056273. Funding This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 8, No. 15. See the NIHR Journals Library website for further project information.

scholarly journals Does Sense make sense? Mixed methods study of a Dutch sexual health program

2019 ◽  
Vol 29 (Supplement_4) ◽  
Author(s):  
R Joosten ◽  
L Jochems ◽  
C Wijsen ◽  
T Heijman ◽  
A Timen
Keyword(s):  
Health Care ◽  
Mixed Methods ◽  
Young People ◽  
Sexual Health ◽  
Health Care Professionals ◽  
Mixed Methods Study ◽  
Structured Interviews ◽  
Open Atmosphere ◽  
Study Results

Abstract In the Netherlands, the Sense program addresses several key elements of sexual health for young people &lt;25 year. This program offers free consultations at the PHS concerning STI, contraceptives, pregnancy or sexuality. The performance of this program has not been studied yet. This mixed methods study investigates facilitators and barriers of a Sense consultation from the perspective of clients and health care professionals (HCP) and investigates the outcome of the consultation at three points in time. Semi-structured interviews were conducted after consultation among 16 clients and 6 HCP. Questionnaires were collected directly after consultation and at 3, 6 and 12 months after consultation. Two cohorts were recruited; clients with STI consultation only and clients with questions related to sexuality, contraception and pregnancy (Sense consultation, SC). Satisfaction of the consultation and applicability of the given advice was measured. In the follow up presence of STI, pregnancy, sexual problem and contraceptive use was measured. A minority of the interviewed clients were familiar with Sense, highly valued the expertise of the HCP and the open atmosphere during the consultation. Reasons for visiting Sense included expertise, more anonymity and feeling more comfortable than at the GP. The questionnaire after consultation was returned by 144 STI clients and 32 SC clients. Both type of consultation were highly valued and advice was easily applicable. The follow up cohort included 97 STI clients and 23 SC clients. Response rate of the 3- and 6 month-questionnaires was 61%. Results of the full one year follow-up are expected in September 2019. Study results provide evidence for a highly valued Sense program, by both clients and HCP. Sense is a platform to discuss STI, contraception and sexuality in an open atmosphere, though familiarity with Sense is low. A major conclusion is that an STI consultation provides the opportunity to address questions related to sexuality. Key messages The Sense program is highly valued by young people, and yet the program is not widely known among young people. There is need for more publicity to the program to enable more young people to use this program and to improve the sexual health care of young Dutch people.

P4-276: Health services development research with people with dementia: Key features, factors, and learning from a multi-site, mixed methods study

2015 ◽  
Vol 11 (7S_Part_19) ◽  
pp. P891-P891
Author(s):  
Michael Bowen ◽  
Rosa Pepe ◽  
Sarah Buchanan ◽  
David Edgar ◽  
Lesley Hall ◽  
...  
Keyword(s):  
Mixed Methods ◽  
Health Services ◽  
Mixed Methods Study ◽  
Development Research ◽  
People With Dementia ◽  
Key Features
Sign in / Sign up

Export Citation Format

Share Document