The supportive care needs of parents caring for a child with a rare disease : a scoping review

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. 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. 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. 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. 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

The supportive care needs of parents with a child with a rare disease : results of an online survey

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. 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. 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). 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

The supportive care needs of parents with a child with a rare disease: a qualitative descriptive study

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

The supportive care needs of individuals recovering from first episode psychosis: a scoping review

Background: First episode psychosis (FEP) can be a traumatic experience thatmay 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 postdiagnosis. 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 individualsmay require more supportive care in their recovery journey

Needs of individuals recovering from a first episode of mental illness: a scoping review

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

Needs of individuals recovering from a first episode of mental illness: a scoping review

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

Needs of individuals recovering from a first-episode of mental illness: a qualitative descriptive analysis of focus group discussions

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

Introducing the Needs in Recovery Assessment (NiRA) into clinical practice: protocol for a pilot study investigating the formal and systematic assessment of clinical and social needs experienced by service users at a tertiary, metropolitan mental health service

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</p

Development and psychometric testing of the gender misconceptions of men in nursing (GEMINI) scale among nursing students

Background: Misconceptions about men in nursing may influence recruitment and retention, further perpetuating the gender diversity imbalance in the nursing workforce. Identifying misconceptions and implementing early intervention strategies to address these deep-rooted stereotypes remain challenging but is considered critical to support students who are commencing a nursing career. Objective: To develop and evaluate the psychometric properties of the ‘Gender Misconceptions of meN in nursIng (GEMINI) Scale. Design: Cross-sectional survey. Methods: Pre-registration nursing students enrolled in undergraduate nursing programmes across 16 nursing institutions in Australia were surveyed from July to September 2021. The 17-item self-report GEMINI Scale measured the gender misconceptions of men in nursing. Results: Of the 1410 completed surveys, data from 683 (45%) women were used for exploratory factor analysis showing a one factor structure, while data from 727 men (47%) were used for confirmatory factor analysis of the 17-item GEMINI Scale, which showed a good model fit. The scale demonstrated high internal consistency (Cronbach’s alpha of 0.892). Men were found to have higher gender misconceptions (p \u3c 0.001) while respondents who: (a) identified nursing as their first career choice (p = 0.002); (b) were in their final year of programme enrolment (p = 0.016); and (c) engaged in health-related paid work (p = 0.002) had lower gender misconceptions. Conclusion: The GEMINI Scale is a robust, valid, reliable, and easy to administer tool to assess misconceptions about men in nursing, which may potentially influence academic performance and retention. Identifying and addressing specific elements of misconceptions could inform targeted strategies to support retention and decrease attrition among these students. Impact statement: Genderism harms nursing, as well as the men and women working in the profession. Recruitment and retention of men into nursing is needed to cultivate male role models and diversify the workforce, however this is impeded by negative portrayals in popular culture and misconceptions entrenched in society