Lilas Ali

Daily life for young adults who care for a person with mental illness: a qualitative study

This study describes the daily life and management strategies of young informal carers of family members or friends with mental illness. Twelve young adults (three men and nine women; 16-25 years old) in Sweden were voluntarily recruited between February and May 2008. Data collected through eight individual semi-structured interviews and one focus group interview were analysed using qualitative content analysis. The findings revealed nine subthemes that were further grouped into three main themes: showing concern, providing support and using management strategies. Participants lived in constant readiness for something unexpected to happen to the person they cared for, and their role in the relationship could change quickly from family member or friend to guardian or supervisor. Supporting a friend was considered as large a personal responsibility as supporting a family member. Their management strategies were based on individual capacities and their ability to step aside should the situation become too demanding. These young informal carers need support in caring for the mentally ill. As the internet becomes increasingly fundamental to daily life, support could be provided most effectively through person-centred web sites.

Effectiveness of web-based versus folder support interventions for young informal carers of persons with mental illness: A randomized controlled trial

OBJECTIVE Compare the impact of two interventions, a web-based support and a folder support, for young persons who care for people who suffer from mental illness. METHODS This study was a randomized control trial, following the CONSORT statements, which compared the impact of two interventions. Primary outcome variable was stress, and secondary outcome variables were caring situation, general self-efficacy, well-being, health, and quality of life of young informal carers (N=241). Data were collected in June 2010 to April 2011, with self-assessment questionnaires, comparing the two interventions and also to detect changes. RESULTS The stress levels were high in both groups at baseline, but decreased in the folder group. The folder group had improvement in their caring situation (also different from the web group), general self-efficacy, well-being, and quality of life. The web group showed increase in well-being. CONCLUSION Young informal carers who take on the responsibility for people close to them; suffer consequences on their own health. They live in a life-situation characterized by high stress and low well-being. This signals a need for support. PRACTICE IMPLICATIONS The non-significant differences show that each intervention can be effective, and that it depends upon the individuals preferences. This highlights the importance of adopting person-centered approach, in which young persons can themselves choose support strategy.

Support for Young Informal Carers of Persons with Mental Illness: A Mixed-Method Study

The aim of this study was to explore how young (16–25 year old) informal carers of a person with a mental illness experience and use support. In a mixed method approach, we interviewed 12 young carers, and 241 completed a self-administered questionnaire. While the young carers strive to maintain control, their main support seems to be others in their lives, who often define the situation differently. The carers said web-support, counseling, and group counseling might be helpful, yet very few had any professional support. Young carers are greatly in need of support and it should be provided.

Discovering untapped relationship potential with patients in telehealth: a qualitative interview study

Objectives To explore factors that influence relationship building between telehealth professionals and patients with chronic illness over a distance, from a telehealth professionals perspective. Design 4 focus group interviews were conducted in June 2014. Digital recordings were transcribed verbatim and qualitative content analysis was performed using an iterative process of 3 coding rounds. Participants 20 telehealth professionals. Setting A telehealth service centre in the south of Germany that provided care for 12 000 patients with chronic heart failure across Germany. Results Non-video telehealth technology creates an atmosphere that fosters sharing of personal information and a non-judgemental attitude. This facilitates the delivery of fair and equal healthcare. A combination of a protocol-driven service structure along with shared team and organisational values provide a basis for establishing long-term healthcare relationships. However, each contact between a telehealth professional and a patient has an uncertain outcome and requires skilful negotiation of the relationship. Although care provision was personalised, there was scope to include the patients as ‘experts on their own illness’ to a greater extent as advocated by person-centred care. Currently, provision of person-centred care is not sufficiently addressed in telehealth professional training. Conclusions Telehealth offers a viable environment for the delivery of person-centred care for patients with long-standing disease. Current telehealth training programmes may be enhanced by teaching person-centred care skills.

Need of support in people with chronic obstructive pulmonary disease

Aim and objective The aim of this study was to describe peoples’ experiences and expectations of support when living with chronic obstructive pulmonary disease. Method We conducted and analysed face‐to‐face or telephone interviews with 17 individuals (aged 44–77 years) diagnosed with chronic obstructive pulmonary disease. The interviewer asked open‐ended questions aimed at encouraging further narration, and we analysed the participants’ narratives using a phenomenological hermeneutical approach. This report adheres to the COREQ guidelines. Results The overall theme suggests that people with chronic obstructive pulmonary disease describe support as shared knowledge and experiences, based on the following subthemes; similar experiences, the need of genuine professional knowledge, self‐reliance versus self‐blame, and the Internet – feeling safe but uncertain. Conclusions People with chronic obstructive pulmonary disease find their strength through shared knowledge and dialogical support with others who have similar experiences and with professionals. A person‐centred eHealth approach may be suitable for this group as it offers both collaboration and support. Relevance to clinical practice There is a demand for access to genuine professional knowledge as additional support to patients’ own capabilities and needs. Patient associations were assessed as reliable sources of information and to some extent also support, but the importance of access to professional sources was also stressed.

S253. PERSON-CENTERED PSYCHOSIS CARE (PCPC) IN AN INPATIENT SETTING: PATIENT OUTCOMES

Abstract Background The person-centered care approach has been little tested in inpatient settings for persons with schizophrenia and similar psychoses. We developed a staff educational intervention, Person-Centered Psychosis Care (PCPC) tailored to our care setting (4 hospital wards for persons with psychoses, 43 beds). The intervention was co-created by professionals, patients, and researchers using a participatory approach. There was a focus on the patient’s narrative, the creation of partnership between staff and patient, an agreement between staff and patient concerning care, and a bridging of inpatient and outpatient care and support. The present study aims to describe patient outcomes associated with PCPC. Methods The study had a before and after design. Before the PCPC intervention started, questionnaire data was collected from 50 inpatients shortly before discharge. Post intervention data are currently under collection (anticipated n=50). The primary outcome measure is self-reported empowerment (Empowerment Scale, Range 0–112) and the secondary measure is consumer satisfaction (UKU-ConSat Rating Scale, converted to range between 11 and 77). Participants also complete questionnaires related to possible confounding variables such as overall health (EQ-5D), symptom burden (PANSS), and functional ability (GAF). Results The participants (46% women) included in the pre-intervention sample had a mean age of 47.5 years (SD=14.5). The total mean empowerment score for the pre-intervention sample was 82.6 (SD=8.1) whereas the mean consumer satisfaction score was 51.5 (SD=12.9). There were no statistically significant gender differences regarding empowerment or consumer satisfaction. There were no significant correlations between age, any of the confounding variables, and empowerment and consumer satisfaction. We will present results from comparisons between the pre- and post-intervention groups regarding empowerment and consumer satisfaction. Discussion The before and after design has its limitations, but if the PCPC intervention proves beneficial, such a model could be tested with a cluster randomized study design.

Effects of a person-centred telephone-support in patients with chronic obstructive pulmonary disease and/or chronic heart failure – A randomized controlled trial

Purpose To evaluate the effects of person-centred support via telephone in two chronically ill patient groups, chronic obstructive pulmonary disease (COPD) and/or chronic heart failure (CHF). Method 221 patients ≥ 50 years with COPD and/or CHF were randomized to usual care vs. usual care plus a person-centred telephone-support intervention and followed for six months. Patients in the intervention group were telephoned by a registered nurse initially to co-create a person-centred health plan with the patient and subsequently to discuss and evaluate the plan. The primary outcome measure was a composite score comprising General Self-Efficacy (GSE), re-hospitalization and death. Patients were classified as deteriorated if GSE had decreased by ≥ 5 points, or if they had been re-admitted to hospital for unscheduled reasons related to COPD and/or CHF or if they had died. Results At six-month follow-up no difference in the composite score was found between the two study groups (57.6%, n = 68 vs. 46.6%, n = 48; OR = 1.6, 95% CI: 0.9–2.7; P = 0.102) in the intention-to-treat analysis (n = 221); however, significantly more patients in the control group showed a clinically important decrease in GSE (≥ 5 units) (22.9%, n = 27 vs. 9.7%, n = 10; OR = 2.8, 95% CI: 1.3–6.0; P = 0.011). There were 49 clinical events (14 deaths, 35 re-admissions) in the control group and 41 in the intervention group (9 deaths, 32 re-admissions). Per-protocol analysis (n = 202) of the composite score showed that more patients deteriorated in the control group than in the intervention group (57.6%, n = 68 vs. 42.9%, n = 36; OR = 1.8, 95% CI 1.0–3.2; P = 0.039). Conclusion Person-centred support via telephone mitigates worsening self-efficacy without increasing the risk of clinical events in chronically ill patients with CHF and/or COPD. This indicates that a patient-healthcare professional partnership may be established without the need for face-to-face consultations, even in vulnerable patient groups. Trial registration ISRCTN.com ISRCTN55562827.

Study protocol design and evaluation of a hospital-based multi-professional educational intervention: Person-Centred Psychosis Care (PCPC)

BackgroundWhile patient involvement in mental health care is repeatedly stressed in policy documents, there are actually few studies that evaluate person-centred care interventions within psychiatric services. We present here the design and planned evaluation of an educational intervention for inpatient staff involved in the care of persons with schizophrenia and similar psychoses.Methods/designThe care intervention will be assessed using a non-randomised trial with a before and after approach. The intervention involves an educational and experimental learning phase for hospital staff, followed by an implementation phase. The intervention is multi-professional; psychiatrists, psychiatric nurses, psychiatric carers, social workers, occupational therapists, and a medical secretary will be engaged in a participatory approach where they practice how to create a partnership and explore recovery-related goals together with patients. Patient-related outcomes include empowerment and satisfaction with care. Ward-level outcomes include daily ward burden, length of inpatient stay, and number of days with involuntary care. In addition, qualitative methods will be applied to capture patient, next-of-kin, and staff perspectives.DiscussionThe care intervention is expected to contribute to the improvement of inpatient care for persons with severe and complex mental health issues.Trial registrationThe trial was retrospectively registered at ClinicalTrials.gov June 9, 2017, identifier: NCT03182283.

Caring Situation, Health, Self-efficacy, and Stress in Young Informal Carers of Family and Friends with Mental Illness in Sweden.

This study compared the caring situation, health, self-efficacy, and stress of young (16–25) informal carers (YICs) supporting a family member with mental illness with that of YICs supporting a friend. A sample of 225 carers, assigned to a family group (n = 97) or a friend group (n = 128) completed the questionnaire. It was found that the family group experiences a lower level of support and friends experienced a lower positive value of caring. No other differences in health, general self-efficacy and stress were found. YICs endure different social situations, which is why further study of the needs of YICs, especially those supporting friends, is urgently needed.