Search

Background The Needs in Recovery Assessment (NiRA) is a newly developed needs assessment tool, designed to identify the needs of people recovering from mental illness. This tool has been evaluated outside of the clinical context for validity and reliability. The aim of this study is to introduce the NiRA into clinical practice and to evaluate the value of the NiRA as an adjunct to service delivery from the perspectives of stakeholders and to evaluate the barriers and facilitators of embedding the NiRA in a mental health service. Methods The establishment of the NiRA in a tertiary mental health unit over a 6-month period will be evaluated using a multi-methods approach. Quantitative data will be collected using the NiRA itself and the Recovery Self-Assessment (RSA). Face-to-face interviews with service users and clinicians will be conducted following the initial completion of the NiRA, with a follow-up interview for service users on discharge from the service. Regular informal follow-up with clinicians throughout the study will support the introduction of the NiRA. Descriptive statistics will be used to analyse quantitative data, and descriptive qualitative methods will be used to analyse data from interviews. Discussion Aligning mental health services with recovery-oriented frameworks of care is imperative. The NiRA is a tool that has been designed in accordance with recovery principles and may assist services to be more recovery-oriented. If the NiRA is able to achieve the aims and objectives of this project, a larger implementation study will be conducted. Trial registration Australian and New Zealand Clinical Trial Registry (ANZCTR), ACTRN12621000316808

A broad array of needs often arise for individuals when significant physical or mental illness occurs. The aim of this study was to investigate the needs experienced by individuals recovering from a first-episode of mental illness, to explore how these needs have been assessed and to gauge the acceptability of participating in formal, systematic needs assessments in the future. Fifteen individuals who had presented to a tertiary mental health service within the previous 3 years, and who were considered to be recovering from a first-episode of mental illness discussed their current and previous needs in small focus groups. A qualitative descriptive methodology was adopted to analyse data. Three themes incorporating the broad range of inter-related and often complex needs were identified as being: the need for safety, stability and security; the need to be understood and to understand and; the need for support networks and services. Participants reported a lack of involvement in discussions with mental health clinicians regarding their needs, and were in favour of participating in formal, systematic needs assessments in the future. Refereed/Peer-reviewed

Recovering from a first episode of mental illness entails unique challenges and often includes experiencing unmet needs. The availability of a formal, structured and valid means of assessing the needs of individuals recovering from a first episode of mental illness may improve mental health service delivery. This article describes the development of a new needs assessment tool, the Needs in Recovery Assessment (NiRA), and presents the results of processes used to validate the tool. The NiRA was developed using data collected in a previous literature review and focus groups with mental health service users. It contains three sections for the identification, prioritization, planning and re-evaluation of a broad array of needs. It was presented in two workshops, where mental health service users and clinicians evaluated its validity, acceptability and usability. Items of need and the format of the NiRA were evaluated using Likert-scale questions, open-ended short answer and closed questions. Each item of need was evaluated for its validity by a panel of experts via an online survey. Descriptive statistics were used to analyse data, including means, percentages and the Content Validity Index (CVI).Streiner and Kottner's scale development and testing guidelines were used in the reporting of this study. 48 items of need were evaluated as valid by mental health service users, clinicians and academics. Most items received an I-CVI of greater than.93. The scale CVI/Avg was.96. The NiRA is perceived as a valid and acceptable tool for assessing the needs of people recovering from a first episode of mental illness Refereed/Peer-reviewed

Lemuel J Pelentsov,1 Andrea L Fielder,2,3 Thomas A Laws,4 Adrian J Esterman1,2,5 1School of Nursing and Midwifery, 2Sansom Institute for Health Research, 3School of Pharmacy and Medical Sciences, University of South Australia, Adelaide, SA, Australia; 4School of Nursing and Midwifery, Faculty of Health, Keele University, Staffordshire, UK; 5Australian Institute for Health and Tropical Medicine, James Cook University, Cairns, QLD, Australia Background: Children and families affected by rare diseases have received scant consideration from the medical, scientific, and political communities, with parents’ needs especially having received little attention. Affected parents often have limited access to information and support and appropriate health care services. While scales to measure the needs of parents of children with chronic illnesses have been developed, there have been no previous attempts to develop a scale to assess the needs of parents of children with rare diseases. Objective: To develop a scale for measuring the supportive care needs of parents of children with rare diseases. Method: A total of 301 responses to our Parental Needs Survey were randomly divided into two halves, one for exploratory factor analysis and the other for confirmatory factor analysis (CFA). After removing unsuitable items, exploratory factor analysis was undertaken to determine the factor structure of the data. CFA using structural equation modeling was then undertaken to confirm the factor structure. Results: Seventy-two items were entered into the CFA, with a scree plot showing a likely four-factor solution. The results provided four independent subscales of parental needs: Understanding the disease (four items); Working with health professionals (four items); Emotional issues (three items); and Financial needs (three items). The structural equation modeling confirmed the suitability of the four-factor solution and demonstrated that the four subscales could be added to provide an overall scale of parental need. Conclusion: This is the first scale developed to measure the supportive care needs of parents of children with rare diseases. The scale is suitable for use in surveys to develop policy, in individual clinical assessments, and, potentially, for evaluating new programs. Measuring the supportive care needs of parents caring for a child with a rare disease will hopefully lead to better physical and psychological health outcomes for parents and their affected children. Keywords: rare diseases, parents, scale, supportive care needs, measure, factor analysis

There are few studies that exist which focus specifically on parents with a child with a rare disease. The purpose of this study was to better understand the lived experiences and supportive care needs (SCN) of parents caring for a child across a spectrum of rare diseases. A qualitative descriptive approach was used to guide the research, and four semi-structured focus group interviews were conducted with 23 parents(17 mothers and 6 fathers). Participants described ‘feeling boxed-in outside the box’ due to a number of limitations unique to their child's disease, daily practical challenges in providing care and the various relational impacts of caring for a child with a rare disease were discussed. The results from this study help to give clearer direction for health professionals on where to focus future efforts in better meeting the supportive care needs of parents and their child with a rare disease. Refereed/Peer-reviewed

Central to the role of mental health clinicians is the assessment of needs. A number of assessment tools have been used to evaluate the needs of individuals diagnosed with a mental illness. These tools have largely been developed for people with a severe and persistent mental illness and may not be suitable for individuals who are recovering from a first episode of mental illness. The aims of this review were therefore to identify the needs experienced by individuals recovering from a first episode of mental illness; determine what tools have been used to evaluate these needs; and explore whether existing tools adequately reflect the needs described in the literature. Twenty-one articles were included, comprising articles which identified needs (n = 10), needs assessment tools (n = 1), or articles which identified both needs and a needs assessment tool (n = 10). Results indicate that individuals who have been admitted to a specialized mental health unit and are recovering from a first episode of mental illness may experience an extensive range of needs, spanning emotional,psychological, social, informational, functional, practical, and relationship needs. Four established needs assessment tools were found to have been used to evaluate these needs;however, these do not appear to represent all needs discovered in this review, were mostly developed for populations with a long-term mental illness, and may not be suitable for assessing the needs of individuals recovering from a first episode of mental illness following a presentation to a specialized mental health unit. Refereed/Peer-reviewed

Background: First episode psychosis (FEP) can be a traumatic experience that may alter an individual's ability to meet their own needs. The Supportive Care Needs Framework (SCNF) could complement the recovery-oriented, person-centred approach that is the current foundation of mental health care. Aim: To identify the supportive care needs (SCNs) of individuals recovering from a FEP Methods: A scoping review of the literature was undertaken. Review questions were developed,and relevant studies were identified through database and hand searches of peer-reviewed journal articles. Data from selected articles were tabulated, and contextual meaning was given to the data through a process of collating, summarizing, and reporting. Results: A total of 14 peer-reviewed journal articles met inclusion criteria. SCNs were identified at different stages of recovery, ranging from initial treatment to 7 years post diagnosis. Emotional, informational, practical, psychological, and social needs were identified in over half of the included articles, while needs in the physical and spiritual domains were identified in less than five. Conclusions: Unmet needs in each of the seven domains of need of the SCNF were identified in this population. There are a number of gaps in the literature relating to the specific needs of this population and the timing for which individuals may require more supportive care in their recovery journey. Refereed/Peer-reviewed

Background: Parents caring for a child affected by a rare disease have unmet needs, the origins of which are complex and varied. Our aim was to determine the supportive care needs of parents caring for a child with a rare disease.\ud \ud \ud Methods: An online survey was developed consisting of 45 questions (108 items) and separated into six domains. The survey included questions about perceived level of satisfaction with receiving care, experiences and needs of providing daily care, the impacts of disease on relationships, the emotional and psychological burdens of disease, and parents overall satisfaction with the support received.\ud \ud \ud Results: Three-hundred and one parents from Australia and New Zealand completed the survey; 91 % (n = 275/301) were mothers, with 132 distinct rare diseases being reported. Fifty-four percent (n = 140/259) of parents were dissatisfied with health professionals’ level of knowledge and awareness of disease; 71 % (n = 130/183) of parents felt they received less support compared to other parents. Information regarding present (60 %, n = 146/240) and future services (72 %, n = 174/240) available for their child were considered important. Almost half of parents (45 %, n = 106/236) struggled financially, 38 % (n = 99/236) reduced their working hours and 34 % (n = 79/236) ceased paid employment. Forty-two percent (n = 99/223) of parents had no access to a disease specific support group, and 58 % (n = 134/230) stated that their number of friends had reduced since the birth of their child; 75 % (n = 173/230) had no contact with other parents with a child with a similar disease, and 46 % (n = 106/230) reported feeling socially isolated and desperately lonely. Most frequent emotions expressed by parents in the week prior to completing the survey were anxiety and fear (53 %, n = 119/223), anger and frustration (46 %, n = 103/223) and uncertainty (39 %, n = 88/223).\ud \ud \ud Conclusion: This study is the first to develop an online survey specifically for use with parents to investigate their supportive care needs across a large and diverse group of rare diseases. The findings highlight that parents with a child with a rare disease have common unmet needs regardless of what disease their child has. Such information may allow health providers to improve child outcomes through improving parental supportive care.

Background: Parents caring for a child with a rare disease report unmet needs, the origins of which are varied and complex. Few studies have systematically attempted to identify the supportive care needs of parents with a child with a rare disease comprehensively. We have used the widely accepted Supportive Care Needs Framework (SCNF) as the structure for this review.\ud \ud \ud Objective: The purpose of the current review was to identify the supportive care needs of parents with a child with a rare disease, irrespective of condition.\ud \ud \ud Methods: We conducted a scoping study review comprising 29 studies (1990–2014) to identify and examine the research literature related to the supportive care needs of parents, and to compare these needs with the seven domains outlined in the SCNF.\ud \ud \ud Results: Most common needs cited were social needs (72% of papers), followed by informational needs (65% of papers) and emotional needs (62% of papers), with the most common parental needs overall being information about their child's disease, emotional stress, guilt and uncertainty about their child's future health care needs, parents own caring responsibilities and the need for more general support.\ud \ud \ud Conclusion: A paucity of studies exists that explore the supportive care needs of parents of a child with a rare disease. The SCNF only partially reflects the breadth and type of needs of these parents, and a preliminary revised framework has been suggested. Further research is required in this area, particularly empirical research to amend or confirm the suggested new framework.