Rare pediatric diseases and pathways to psychosocial care: a qualitative interview study with professional experts working with affected families in Germany

Abstract Background Rare diseases occur in early childhood and have a major impact on the quality of life of the affected children and their families. Their need for psychosocial support is considerable, but psychosocial care in Germany is still far from being part of routine care. We interviewed experts to explore how they describe the current pathways to psychosocial care, potential barriers and problems, and possibilities for improvements. Results We conducted telephone interviews with 49 experts working in somatic medicine, psychosocial medicine, patient organizations, child and youth welfare, and the educational sector. Interviews were transcribed and analyzed using focused interview analysis. Results document ways of access and facilities used by families to receive psychosocial care. The barriers described by the experts can be summarized on three levels: the family-organizational level, the family-psycho-emotional level, and finally, the structural system level. Accordingly, suggestions for improvement were directed at these levels. Conclusion Based on the experts' perspectives, there is ample room for improvement to facilitate the pathways to psychosocial care for children with rare diseases and their families. Unfortunately, there seems to be a long way to go before psychosocial care will be routinely provided. However, awareness of the issue among different professional groups is high, and numerous suggestions for improvement were made, including continuous expansion of services to all family members, strengthening of low-threshold services, simplifying application procedures, and more cooperation between different funding agencies as well as between different care providers.

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The confrontation of those who remain: Qualitative reports of relatives about 3 cases of suicide in a small city in the Northeast Brazil

European Psychiatry ◽

10.1016/j.eurpsy.2017.01.1818 ◽

2017 ◽

Vol 41 (S1) ◽

pp. s893-s893

Author(s):

R.M.C. Sena ◽

J. Izidoro ◽

D.A.R. Silva ◽

E.R. Turato

Keyword(s):

Psychosocial Support ◽

Unit Area ◽

Psychosocial Care ◽

Public Health Problem ◽

Emotional Reactions ◽

Professional Support ◽

List Type ◽

Small Cities ◽

The Family ◽

Competing Interest

IntroductionSuicide is serious public health problem. In Brazil, suicides are more frequent in countryside and small cities.ObjectiveTo understand how informants have confronted emotionally the suicide at home by listening to viewpoints reported by such relatives of the deceased.MethodQualitative, exploratory design, conducted in a basic health unit area, in “Pau dos Ferros”, a city with 30,000 inhabitants, State of Rio Grande do Norte (RN), Brazil. Sample constructed by technique of “snowball”, in which the health team presented us the first family, whose member informed about the following; and this, the third one. Data collection through semi-directed interviews with open-ended questions in depth, and submitted to thematic analysis.ResultsIndividuals from relatives who had family bond with the suicidal people were interviewed. From analysis of transcribed interviews, three categories emerged:– “she has never demonstrated” – possible non-perception of potential suicidal behavior by the family;– “I got crazy” – feelings of relatives facing a hard scene of suicide and determined cultural questionings;– “we have no professional support in following days” – absence of psychosocial support and healthcare problems.ConclusionsPossible mood oscillations from suicidal persons were masked by opposite emotional reactions of themselves, and/or oscillations were denied by the observers. Suicide scene seems to have provoked feelings of helplessness and guilt for relatives in not being able to avoid the dramatic act. Feelings of discomfort occurred facing curiosity from many persons who would raise uncomfortable assumptions about suicidal motivations. Family members complained about lack of more effective psychosocial care.Disclosure of interestThe authors have not supplied their declaration of competing interest.

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Assessment of the current implementation and barriers to uptake of the guidelines for the psychosocial care of adults with cancer according to cancer nurses in Australia.

Journal of Clinical Oncology ◽

10.1200/jco.2013.31.15_suppl.e20615 ◽

2013 ◽

Vol 31 (15_suppl) ◽

pp. e20615-e20615

Author(s):

Catalina Lawsin ◽

Kirsty McMillan ◽

Phyllis Butow ◽

Jane Turner ◽

Patsy Yates ◽

...

Keyword(s):

Medical Treatment ◽

Relaxation Training ◽

Psychosocial Support ◽

Psychosocial Care ◽

Psychosocial Issues ◽

Care Providers ◽

Care Coordinator ◽

Web Based ◽

Current Implementation ◽

Cancer Nurses

e20615 Background: The Clinical Practice Guidelines for the Psychosocial Care of Adults with Cancer (the Guidelines) were launched in 2003 to guide cancer care providers in the assessment of psychosocial issues and provision of evidence-based interventions. Despite multi-faceted Australia-wide dissemination efforts, the current study aimed to be the first to assess current implementation of the Guidelines across and barriers to uptake. Methods: A cross-sectional web-based survey was developed to assess clinical use of recommendations in the Guidelines in relation to the provision of psychosocial support, and assessment of distress and pain. Data was collected about perceived barriers to the provision of psychosocial support at participants’ place of employment, as well as roles and training needs. Cancer nurses were recruited through the Cancer Nurses Society of Australia, the Royal College of Nursing Australia, and the Haematology Society of Australia & New Zealand. Descriptive and correlational analyses were conducted. Results: Of 354 respondents, 266 completed the assessment. Relaxation training was the most prevalent form of psychosocial support (24%) and web-based support (20%) was the most common modality. While 26% of institutions had no systematic means of assessing distress amongst patients, those that did relied primarily on clinical interviews (37%). Once a patient was identified as distressed, most often the care coordinator was responsible for providing ensuing interventions. An organizational culture in which psychosocial issues are seen as less important than medical treatment (23%) and role ambiguity proved to be barriers to provision of psychosocial support, particularly when nurses did not perceive psychosocial support was beneficial and supervision was inadequate (R2= .313, F(1, 265) = 6.58, p < .001). Conclusions: Results confirmed that dissemination does not necessarily equal implementation. Clear pathways for assessment and treatment need to be established to reduce individual barriers and promote organizational cultures that appreciate the need to integrate psychosocial care in standard medical treatment.

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The importance of psychosocial care

Orvosi Hetilap ◽

10.1556/oh.2015.30163 ◽

2014 ◽

Vol 155 (37) ◽

pp. 1485-1492

Author(s):

Mónika Menyhért ◽

Ágnes Csikós ◽

Ildikó Radványi ◽

Csilla Busa

Keyword(s):

Quality Of Life ◽

Retrospective Study ◽

Hospice Care ◽

Psychosocial Support ◽

Psychosocial Care ◽

Study Results ◽

The Family ◽

Future Challenges ◽

Difficult Situations

Introduction: Psychosocial support is very important for cancer patients, because it affects the quality of life of the patients and the course of the disease. It helps the family to deal with difficult situations and prepare for future challenges. Aim: The aim of this study was to analyse the psychosocial care in the Pécs-Baranyai Hospice Foundation and answer the following questions: what are the characteristics of psychosocial care and how many people receive this support. Method: It was a retrospective study. Results: During the 8 years examined, 36% of the patients (273 persons) asked or proposed by anyone psychosocial support for the family. However, meeting between the patient and expert evolved only in 49% of the 273 patients and, thus, only 18% of the patients received psychosocial support. Conclusions: In the Pécs-Baranya Hospice Foundation less patients received psychosocial support, than those who would need it. Psychosocial care is not yet an integral part of hospice care in practice. Orv. Hetil., 2014, 155(37), 1485–1492.

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Children with rare diseases: ethical, social, psychological and medical issues

Rossiyskiy Vestnik Perinatologii i Pediatrii (Russian Bulletin of Perinatology and Pediatrics) ◽

10.21508/1027-4065-2019-64-5-149-154 ◽

2019 ◽

Vol 64 (5) ◽

pp. 149-154

Author(s):

S. Ya. Volgina ◽

E. A. Nikolaeva ◽

A. A. Sokolov ◽

S. V. Kopishinskaia ◽

R. G. Gamirova ◽

...

Keyword(s):

Rare Diseases ◽

Public Awareness ◽

Social Psychological ◽

Medical Problems ◽

Raising Children ◽

Patient Organizations ◽

Medical Issues ◽

Medical Institutions ◽

The Family ◽

Financial Deprivation

The article describes ethical, social, psychological and medical problems in the families raising children with rare diseases. It is quite difficult to diagnose a rare disease. It leads to financial deprivation of the family, social isolation and marginalization. Patient organizations play a large role in public awareness of rare diseases. It is of crucial importance to make treatment accessible, to provide qualified medical care, social support of families, to improve cooperation between research centers, medical institutions and patients.

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Self-Reliance, Social Norms, and Self-Stigma as Barriers to Psychosocial Help Seeking Among Rural Cancer Survivors with Cancer-Related Distress: A Qualitative Interview Study (Preprint)

10.2196/preprints.33262 ◽

2021 ◽

Author(s):

Pamela Baker DeGuzman ◽

David L Vogel ◽

Veronica Bernacchi ◽

Margaret A. Scudder ◽

Mark J Jameson

Keyword(s):

Cancer Survivors ◽

Help Seeking ◽

Psychosocial Care ◽

Care Providers ◽

Self Reliance ◽

Qualitative Interview Study ◽

Strength Based ◽

Qualitative Descriptive ◽

High Distress ◽

Individual Self

BACKGROUND Even when technology allows rural cancer survivors to connect with supportive care providers from a distance, uptake of psychosocial referrals is low. During our telemedicine-delivered intervention aimed at identifying rural survivors with high distress and connecting them with psychosocial care, fewer than 1/3 of those with high distress accepted a referral. OBJECTIVE The purpose of this research was to examine the reasons rural cancer survivors did not accept a psychosocial referral. METHODS We utilized a qualitative descriptive design to analyze data from interviews conducted with participants who had been offered a psychosocial referral during the intervention. Interviews were conducted 6 weeks following the intervention (n=14) and 9 months after the completion of the intervention (n=6). RESULTS Ultimately, none of the rural cancer survivors in our study engaged with a psychosocial care provider, including those who had originally accepted a referral for further psychosocial care. When explaining their decisions, survivors minimized their distress, emphasizing their self-reliance and the need to handle distress on their own. They expressed a preference for dealing with distress via informal support networks, which was often limited to close family members. No survivors endorsed public stigma as a barrier to accepting psychosocial help, but several suggested that self-stigma associated with not being able to handle their own distress was a reason for not seeking care. CONCLUSIONS Rural cancer survivors’ willingness to accept a psychosocial referral may be mediated by the rural cultural norm of self-reliance, and by self-stigma. Interventions to address referral uptake may benefit from further illumination of these relationships as well as a strength-based approach that emphasizes positive aspects of the rural community and individual self-affirmation. CLINICALTRIAL not applicable

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Rare diseases and their patient organization: the Hungarian Federation of People with Rare and Congenital Diseases

Orvosi Hetilap ◽

10.1556/oh.2014.29819 ◽

2014 ◽

Vol 155 (9) ◽

pp. 329-333

Author(s):

Gábor Pogány

Keyword(s):

Social Services ◽

Rare Diseases ◽

Poor Quality ◽

Congenital Diseases ◽

Governmental Organization ◽

Patient Organizations ◽

Long Duration ◽

Care And Support ◽

Educational Professionals ◽

Duration Of Hospitalization

The aim of the author is to discuss special issues of rare diseases, with emphasis on circumstances present in Hungary, including those leading to the foundation of the non-governmental organization, the Hungarian Federation of People with Rare and Congenital Diseases. The author briefly reviews the most important findings of current international surveys which have been performed with or without the involvement of member associations of the Hungarian Federation of People with Rare and Congenital Diseases. At the level of medical and social services in Hungary, it is still “incidental” to get to the appropriate expert or centre providing the diagnosis or treatment. It is difficult to find the still very few existing services due to the lack of suitable “pathways” and referrals. There are long delays in obtaining the first appointment, resulting in vulnerability and inequality along the regions. The overall consequence is the insufficiency or lack of access to medical and social services. There are also difficulties related to the supply of orphan medication and the long duration of hospitalization. At the level of patient organizations financial scarcity and uncertainty are typical, combined with inappropriate infrastructural background and human resources. The poor quality of organization of patient bodies along with insufficient cooperation among them are characteristic as well. The author concludes that a National Plan or Strategy is needed to improve the current fragmentation of services which would enable patients and health, social and educational professionals to provide and use the best care in the practice. This would ensure all patients with rare diseases to be diagnosed within a possible shortest time allowing access to the care and support needed in time resulting in a decrease in burden of families and society. Orv. Hetil., 2014, 155(9), 329–333.

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What does effective end-of-life care at home for children look like? A qualitative interview study exploring the perspectives of bereaved parents

Palliative Medicine ◽

10.1177/02692163211023300 ◽

2021 ◽

pp. 026921632110233

Author(s):

Cari Malcolm ◽

Katherine Knighting

Keyword(s):

End Of Life ◽

End Of Life Care ◽

Care Service ◽

Life Care ◽

Care Providers ◽

Specialist Care ◽

Bereaved Parents ◽

Home Based ◽

Qualitative Interview Study ◽

At Home

Background: End-of-life care for children with life-shortening conditions is provided in a range of settings including hospital, hospice and home. What home-based, end-of-life care should entail or what best practice might look like is not widely reported, particularly from the perspective of parents who experienced the death of a child at home. Aim: To explore the value and assess the effectiveness of an innovative model of care providing home-based, end-of-life care as perceived by families who accessed the service. Design: A qualitative descriptive study design was employed with in-depth semi-structured interviews conducted with bereaved parents. Setting/participants: Thirteen bereaved parents of 10 children supported by the home-based end-of-life care service. Results: Parents reported effective aspects of end-of-life care provided at home to include: (1) ability to facilitate changes in preferred place of death; (2) trusted relationships with care providers who really know the child and family; (3) provision of child and family-centred care; (4) specialist care and support provided by the service as and when needed; and (5) quality and compassionate death and bereavement care. Parents proposed recommendations for future home-based end-of-life care including shared learning, improving access to home-based care for other families and dispelling hospice myths. Conclusion: Parents with experience of caring for a dying child at home offer valuable input to future the policy and practice surrounding effective home-based, end-of-life care for children. New models of care or service developments should consider the key components and attributes for effective home-based end-of-life identified by bereaved parents in this study.

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eHealth for patients with rare diseases: the eHealth Working Group of the European Reference Network on Rare Multisystemic Vascular Diseases (VASCERN)

Orphanet Journal of Rare Diseases ◽

10.1186/s13023-020-01604-4 ◽

2021 ◽

Vol 16 (1) ◽

Author(s):

Alessia Paglialonga ◽

Raffaella Gaetano ◽

Leema Robert ◽

Marine Hurard ◽

Luisa Maria Botella ◽

...

Keyword(s):

Rare Diseases ◽

Working Group ◽

Vascular Diseases ◽

Mobile App ◽

Reference Network ◽

Training And Education ◽

Digital Platforms ◽

Patient Organizations ◽

European Reference Network ◽

Strategic Assets

Abstract Background The European Reference Network on Rare Multisystemic Vascular Diseases (VASCERN) was launched in 2017 and involves, to date, 35 highly specialised multidisciplinary expert centres (from the 30 full Healthcare Provider members) coming from 11 countries and more than 70 patient organizations from 16 countries. The eHealth Working Group (WG) of VASCERN was set up to develop practical, patient-centred solutions and strategies for effective use of eHealth tools to answer the needs of patients with multisystemic vascular rare diseases. The eHealth WG Following the identified patients’ needs and following the guiding principles of collaboration and patient-centredness, the eHealth WG was created with the following aims: to develop a mobile app to help patients find expert centres and patient organizations, and to develop resources (Pills of Knowledge, PoK) for training and education via digital platforms (eLearning). The mobile app includes, to date, functionalities that allow users to find expert centres and patient organizations across Europe in the area of rare multisystemic vascular diseases. Discussed app developments include personalized digital patient passports, educational material, emergency management guidelines and remote consultations. Regarding training and education, a variety of PoK have been developed. The PoK cover several topics, target several user groups, and are delivered in various formats so that they are easy-to-use, easy-to-understand, informative, and viable for delivery and sharing through digital platforms (eLearning) including, e.g., the VASCERN YouTube™ channel. Conclusion Overall, the work carried out by the eHealth WG of VASCERN can be seen as a pilot experience that may serve as a basis to for collaborative development of patient-centred eHealth tools that answer the needs of patients with various rare diseases, not limited to rare multisystemic vascular diseases. By expanding the multidisciplinary approach here described, clinical and research networks can take advantage of eHealth services and use them as strategic assets in achieving the ultimate goal of ensuring equity of access to prevention programs, timely and accurate diagnosis and specialized care for patients with rare diseases throughout Europe.

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Men’s perceptions of sexual and reproductive health education within the context of pregnancy and HIV in Zambia: a descriptive qualitative analysis

BMC Public Health ◽

10.1186/s12889-021-11430-3 ◽

2021 ◽

Vol 21 (1) ◽

Author(s):

Tulani Francis L. Matenga ◽

Joseph Mumba Zulu ◽

Sharon Nkwemu ◽

Perfect Shankalala ◽

Karen Hampanda

Keyword(s):

Reproductive Health ◽

Antenatal Care ◽

Health Care Providers ◽

Sexual And Reproductive Health ◽

Decision Makers ◽

Care Providers ◽

Convenience Sample ◽

Essential Information ◽

Women Living With Hiv ◽

The Family

Abstract Background Although health care providers are beginning to focus on men’s roles as fathers and husbands, there is limited understanding of how men view their ability to promote sexual and reproductive health in families affected by HIV and their experiences with receiving education through antenatal care. This paper aims to explore men’s perceptions of the education they need regarding sexual and reproductive health within the family in the context of HIV. Methods We interviewed a convenience sample of 18 male partners of pregnant women living with HIV in Lusaka, Zambia. Atlas.ti was used to facilitate data management and content analysis. Results Men reported being the primary decision-makers regarding sexual and reproductive issues in the family; however, they admitted far-reaching unmet needs in terms of information on sexual and reproductive health in the context of HIV. Most men felt that antenatal care was not a conducive setting to fully educate men on sexual and reproductive health because it is a woman’s space where their health concerns were generally neglected. There was a strong desire for more education that was specific to men’s sexual and reproductive health, especially because all the couples were affected by HIV. Men especially requested education on sexual preparedness, safe sex, the use of condoms in sero-concordant and sero-discordant relationships and general health information. Although men stated they were the main decision-makers regarding sexual and reproductive issues such as pregnancy, most men were not confident in their ability to promote sexual and reproductive health in the family because of limited knowledge in this area. Conclusion There is need to change the environment and messaging of antenatal care, as well as offer relevant education opportunities outside health facility settings to empower men with essential information for meaningful involvement in sexual and reproductive health in the context of HIV.

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Getting Special Care Dentistry Ready for a Foreseeable Future. Reinstated Services and Mitigation Measures to Curb COVID-19 Disruption

Dentistry Journal ◽

10.3390/dj9020016 ◽

2021 ◽

Vol 9 (2) ◽

pp. 16

Author(s):

Arkadiusz Dziedzic

Keyword(s):

Dental Care ◽

Routine Care ◽

Special Care ◽

Standard Operating Procedures ◽

Mitigation Measures ◽

Care Providers ◽

Foreseeable Future ◽

Standard Operating

In March 2020, dental care providers, including special care dentistry (SCD) services, had to face an extraordinary change of their standard operating procedures (SOP), with deferred domiciliary dental care, withholding conscious dental sedation services and disrupted routine care [...]

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