Science museums can be a rich learning context, where visitors engage with scientific practices with few formal requirements. However, science museums can be experienced as not welcoming to migrant families due to social, economic, and cultural barriers. In this study, we asked what language-related challenges migrant families experienced in Dutch science museums and what recommendations they had for linguistic inclusion. We interviewed twelve families of Turkish, Moroccan, or Syrian backgrounds after their visit to a Dutch science museum. We discovered that (1) first-generation families found the predominance of Dutch in the museum challenging, (2) the science language used in the museum brought on additional challenges, and (3) the families saw potential emotional benefits to the presence of their mother tongue in the museum, albeit expressing a need for Dutch to remain at the center of the linguistic landscape in the museum. These findings show that language plays a role in migrant families’ experiences in science museums. The findings invite science museums to engage in a dialogue with migrant communities about their needs when it comes to more inclusive museum experiences.
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Background: Intellectual disability (ID) is a developmental disorder that causes considerably below-average intellectual performance and adaptive behaviour. In the context of the present study, families raising a child with ID are reported to experience multiple challenges that appear not to be well documented in Pakistan. Methods and procedures: Pakistan, which was conducted in Karachi, Pakistan, followed participatory action research, in which the researcher and participants examined their existing experiences of informal social support and then created, implemented, and evaluated actions to strengthen this informal social support. A total of five families (n = 25) participated in the study. These participating families comprise parents, siblings, and significant others, i.e., aunts, uncles, and grandparents, living with the child with ID. Families with children with ID were selected through a school for children with ID who are under 12 years old. This qualitative action research was conducted in two distinct parts, i.e., a) exploratory part and b) action part. This paper presents the findings of the first exploratory part of the study. Aim: The exploratory phase aimed to explore and examine the experiences and challenges families may experience with informal social support while caring for a child with an intellectual disability in Karachi, Pakistan. Findings: Parents often sacrifice their personal needs and aspirations for their children, leading to decreased tolerance and anxiety. Lack of communication, support, and assistance from family members is another significant issue. Stigmatisation and discrimination from school, relatives, and friends can cause depression and distress. The study emphasises the need for a unified and coordinated approach to support and care. Religious beliefs, siblings, and close friends provide comfort and well-being. When parents manage to connect with similar families, they have the opportunity to express a collective commitment to caregiving. Conclusion: To strengthen the situation, families propose enhancing intimacy and competency within homes and taking action at the governmental level. Governments must provide appropriate services, such as nurses supporting families, support groups, and religious traditions, to promote acceptance and holistic development for intellectually disabled children.
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INTRODUCTION: In Europe, cancer is one of the predominant causes of mortality and morbidity among older people aged over 65. A diagnosis of cancer can imply a negative impact on the quality of life of the older patients and their families. Despite research examining the impact of cancer on the family, it is unclear what kind of information is available about the types of clinical practice towards older patients with cancer and their families. The aim is to determine the extent, range and variety of research in Europe describing health practices towards families of older patients with cancer and to identify any existing gaps in knowledge.METHODS: Scoping review.RESULTS: A total of 12 articles were included, showing that family interventions are generally based on end-of-life care. Most studies used a qualitative approach and involved different types of family member as participants. Most studies were conducted in the UK.CONCLUSIONS: Review findings revealed limited knowledge about health practices in Europe towards families with an older patient with cancer. This review indicates a need to increase family-focused research that examines health practices that meet the needs of families of older patients with cancer. Seeing cancer as a chronic disease, there is an urgent need for the implementation of family-focused interventions.
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This study examines the reasons of people with dementia request euthanasia and how these reasons change over time with a special focus on reasons related to family. In addition, it examines how family relates to their loved one’s euthanasia wish. Seven people with dementia and a euthanasia wish in the Netherlands were interviewed, and three years later, two of them and five family members were interviewed again. Four themes were identified using thematic analyses: (1) Protecting the relationship from the impact of dementia; (2) Private domain as the primary setting to discuss euthanasia; (3) Implicit expectation to respect and agree with the euthanasia wish; (4) Experienced responsibilities of family regarding the euthanasia wish. Professionals should be aware of the position of family and the interrelatedness of the person’s concern for family happiness and families’ moral commitment to agree and support the wish.
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Een agrarische bedrijfsopvolging is niet alleen een juridische, fiscale en financiële zaak, maar ook (en bovenal) een familiale zaak waarbij emotionele binding en betrokkenheid een rol spelen. Bij advies wordt vaak vooral gedacht aan de ‘harde’ zakelijke kant, maar dit werkboek heeft als doel om families te ondersteunen én sterker en zelfredzamer te maken, juist op de ‘zachte’ kant waarin het gaat om sociale en emotionele verhoudingen.
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Een agrarische bedrijfsopvolging is niet alleen een juridische, fiscale en financiële zaak, maar ook (en bovenal) een familiale zaak waarbij emotionele binding en betrokkenheid een rol spelen. Bij advies wordt vaak vooral gedacht aan de ‘harde’ zakelijke kant, maar dit werkboek heeft als doel om families te ondersteunen én sterker en zelfredzamer te maken, juist op de ‘zachte’ kant waarin het gaat om sociale en emotionele verhoudingen.
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BACKGROUND: Informal care is an essential part of support provided in the homecare setting. To ensure effective healthcare provision, good communication and collaboration between informal and formal care providers are crucial. To achieve this aim, it is necessary to have a clear understanding of the perspectives of all stakeholders. In the scientific literature, limited knowledge is available regarding family members' opinions about their involvement in care. To date, no instruments have been developed that accurately measure these opinions. This study aims to elucidate the opinions of family members about their involvement in nursing care.METHODS: A cross-sectional survey approach was employed. The methodological steps in this study were (1) convert the Families' Importance in Nursing Care-Nurses' Attitudes (FINC-NA) from a nurses' perspective to a family perspective and thus develop the Families' Importance in Nursing Care-Families' Opinions (FINC-FO) and (2) measure families' opinions regarding their involvement in home nursing care. The questionnaire was sent to 3,800 patients with activated patient portals, which accounts for about 17% of the total patient base. Responses were received from 1,339 family members, a response rate of 35%.RESULTS: The developed FINC-FO questionnaire showed homogeneity and internal consistency. The results of the questionnaire indicate that family members consider it important to be involved in care and that they wish to be acknowledged as participants in discussions about care (planning) but are less inclined to actively participate in the provision of care by nurses. Family members expressed less explicit opinions about their own support needs. Factors such as level of education, type of partnership, and amount of care provided are seemingly associated with these opinions.CONCLUSIONS: Family members in the homecare setting wish to be involved in discussions about care (planning). The transition in care from primarily formal to more informal care necessitates an awareness and clear definition-on part of both healthcare professionals and families-of their respective roles in the provision of care. Communication about wishes, expectations, and the need for support in care is essential to ensure quality of care and that the family can sustain caregiving.
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Background: Family quality of life (FQoL) of families that have a child with severe to profound intellectual disabilities (SPID) is an important and emerging concept, however, related variables are inconclusive.Aim: To gain a better understanding of variables related to the FQoL of families that have a child with SPID, variables related to the FQoL of families that have a child with intellectual disabilities (ID) were systematically reviewed.Methods and procedures: A search strategy was performed in five databases. Critical appraisal tools were employed to evaluate the quality of both quantitative and qualitative studies. Data extraction and synthesis occurred to establish general study characteristics, variables, and theoretical concepts. Variables were categorised into four key concepts of the FQoL: systemic concepts, performance concepts, family-unit concepts and individual-member concepts.Outcomes and results: A total of 40 studies were retrieved with 98 variables. Quality scores ranged from 7 to 13 (quantitative) and 5 to 13 (qualitative) out of 13 and 14 points, respectively. Five out of the 40 studies (13%) focused on individuals with SPID. Variables related positively or negatively to the FQoL, and were categorised within systemic concepts (n = 3); performance concepts (n = 11); family-unit concepts (n = 26); and individual-member concepts (n = 58).Conclusions and implications: Several variables were found to be (inter)related to the FQoL of families that have a child with ID. A contrasting picture emerged regarding the impact of a disability in relation to transitional phases. However, studies which include families of children with SPID were minimal, therefore, it remained ambiguous to what extent the identified variables apply to these families.
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Background: In Europe, cardiovascular disease is one of the predominant causes of mortality and morbidity among older people over 65 years. The occurrence of cardiovascular disease can have a negative impact on the quality of life of older patients and their families and family health overall. Assuming that illness is a family affair shaped by culture and health care systems, we explored European health care practices and interventions toward families of older patients with cardiovascular disease and heart failure.Aims: This paper aimed to determine the extent, range, and variety of practices and interventions in Europe directed to families of older patients and to identify knowledge gaps.Materials & Methods: A scoping review was conducted including studies published in Medline, CINHAL, or Cochrane library between 2009 and mid-2020.Results: A total of 22 articles from 17 studies were included, showing diverse practices and interventions. The interventions targeted the family as a unit (six studies), dyads (five studies), patients alone, but assessed family members’ reactions (five studies) or the family member primarily, but assessed the reaction of the patient (one study). Target outcomes were family caregiver burden; health-related QoL; and perceived control in patients; and family functioning and changes in health behavior or knowledge in both, family members and patients. Most studies did not include an integral view of the family as the unit of care but rather had a disease-centered approach.Discussion: This scoping review provides insight into a variety of healthcarepractices towards families of older patients with cardiovascular disease in Europe. Clarifying underlying assumptions to involve families is needed. More studies with family-focused approaches as integral models could lead to practices that improve families’ well-being. Exploring integral models for their acceptance in health care and family systems appears pertinent to develop European policy to support and add to family health.
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Several interventions have been developed to support families living with parental mental illness (PMI). Recent evidence suggests that programmes with whole-family components may have greater positive effects for families, thereby also reducing costs to health and social care systems. This review aimed to identify whole-family interventions, their common characteristics, effectiveness and acceptability. A systematic review was conducted according to PRISMA 2020 guidelines. A literature search was conducted in ASSIA, CINAHL, Embase, Medline, and PsycINFO in January 2021 and updated in August 2022. We double screened 3914 abstracts and 212 papers according to pre-set inclusion and exclusion criteria. The Mixed Methods Appraisal Tool was used for quality assessment. Quantitative and qualitative data were extracted and synthesised. Randomised-control trial data on child and parent mental health outcomes were analysed separately in random-effects meta-analyses. The protocol, extracted data, and meta-data are accessible via the Open Science Framework (https://osf.io/9uxgp/). Data from 66 reports—based on 41 independent studies and referring to 30 different interventions—were included. Findings indicated small intervention effects for all outcomes including children’s and parents’ mental health (dc = −0.017, −027; dp = −0.14, −0.16) and family outcomes. Qualitative evidence suggested that most families experienced whole-family interventions as positive, highlighting specific components as helpful, including whole-family components, speaking about mental illness, and the benefits of group settings. Our findings highlight the lack of high-quality studies. The present review fills an important gap in the literature by summarising the evidence for whole-family interventions. There is a lack of robust evidence coupled with a great need in families affected by PMI which could be addressed by whole-family interventions. We recommend the involvement of families in the further development of these interventions and their evaluation.
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