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

Impaired sexual function and prostate cancer: a mixed method investigation into the experiences of men and their partners

AIMS AND OBJECTIVES: To explore issues related to sexual function and relationships, for men and their wives or partners, following diagnosis and treatment for prostate cancer. BACKGROUND: A diagnosis of prostate cancer and subsequent treatment result in a significant number of men experiencing some impairment to their sexual function. There is scant research into the impact of changed sexual function on these men's masculinity, sexuality, intimate relationships and their needs regarding counselling and supportive care. DESIGN: Internet-based survey. METHODS: Focus groups and couple interviews were used to improve validity for questionnaire items designed to provide insight into men's experiences of prostate cancer in areas such as sexual function and relationships. The questionnaire included both closed and open-ended questions and had the option for the wife or partner to complete a section. RESULTS: Qualitative research revealed 17 specific categories within three key themes: sexual dysfunction, loss of libido and masculinity. The questionnaire found, unexpectedly, the majority of men said that they had sufficient emotional and psychological support. Wives/partners confirmed cancer had impacted on their partner's feelings of masculinity (71%), compared to 42% of men who felt that this was the case. Predictors of loss of libido, erectile dysfunction and 'feeling less of a man' were developed. Univariate predictors included hormone therapy, regrets about treatment choice, cancer having impacted on masculinity and distress during the last week. CONCLUSIONS: Men are not able to clearly identify the challenges prostate cancer brings especially changes to their masculinity. RELEVANCE TO CLINICAL PRACTICE: The findings strongly suggest that for men with prostate cancer, nursing assessments of men's sexual health be augmented by information gained from their partners; further, these assessments should be augmented with a careful exploration of these men's psyche guided by the knowledge that masculinity influences perceptions of self (being a man) and help seeking.Peter K O'Shaughnessy, Colin Ireland, Lemuel Pelentsov, Laws A Thomas and Adrian J Esterma

Informing the midwife on rare genetic disorders and their effects on mothers breastfeeding – a mixed methods study

Background: An inability to breastfeed is a common source of maternal distress. Genetic disorders can prevent lactation and impair mothers and infants ability to express breastmilk. Aim: The purpose of this paper is to report on the experiences of some mothers attempting to breastfeed when they or their infant have the rare genetic disorder ectodermal dysplasia. Methods: A mixed methods approach identified supportive care needs of parents caring for a child with ectodermal dysplasia. A secondary analysis determined that most mothers responding to an online survey and participating in a focus group held unresolved psychological issues related to their inability to breastfeed. The study received ethical clearance from the University of South Australia human research ethics committee prior to proceeding with data collection. Findings: Mothers in this study expressed frustration with the lack of understanding held by healthcare professionals and the lack of practical support when attempting to establish breastfeeding. Emotional comorbidity was linked to perceived failure to breastfeed. Mothers requested an awareness-raising approach to assist midwives and health professionals identify feeding problems earlier. The importance of active listening to mothers’ concerns and refraining from cursory judgement was identified. Implications: While genetic screening is offered to pregnant women who have a known family history of a genetic disorder, many genetic orders are rare and go undetected. Newly birthed mothers with a genetic disorder may encounter difficulties when attempting to establish breastfeeding. More genetic education is needed to assist midwives in gaining a better understanding of how physiological problems, associated with a genetic disorder, may be a root cause of breastfeeding difficulties

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

“Who am I and why am I here?” A scoping review exploring the templates and protocols that direct actors in their roles as simulated (standardized) patients

Simulated patients (SPs) are increasingly used in health education and research. The aim of this article was to investigate templates and protocols that enable SPs to accurately and consistently adopt these roles. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for scoping reviews guided the search strategy for articles that detailed such templates or protocols. Embase Classic + Embase, ProQuest ERIC, Ovid MEDLINE, Ovid EMCare, psycINFO, and Scopus were searched, and 17 articles were included in the review. The templates and protocols that were located differed in structure, length, and depth and were developed or used in medical, nursing, allied health, and veterinary medicine disciplines. The validity, reliability, and replicability of studies are explored, and the quality of reporting is evaluated using the Simulation Research Rubric. recommendations for increasing the rigor of programs and the reporting of research where SPs are adopted are considered.Ellen L. Davies, Lemuel J. Pelentsov, Adam Montagu, Andrea L. Gordon, Kenneth J. Hooper, Adrian J. Esterma

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