Introduction: Caregivers of a child with severe intellectual disability (CWSID) often embody the sole provider of care for their CWSID. Due to the severity of the difficulties their CWSID may experience, these caregivers pose a variety of challenges when caring for their children. The demands placed on the caregiver could lead to high levels of caregiver burden which can influence the quality of child-caregiver relationship. This study evaluated the relationship between caring for a CWSID and the level of burden by using the Burden Scale for Family Caregivers. Additionally, the investigation aimed to identify potential risk factors faced by South African caregivers of CWSID that could possibly increase levels of caregiver burden. Lastly, the study proposed intervention practices that took into account both the potential risk factors identified, as well as the level of caregiver burden experienced to aid childcare. Method: Data were utilised from 218 South African caregivers of CWSID from all over the country. The study applied a quantitative approach and made use of a survey available online and paper based. The questionnaire comprised of two parts. Section A was a demographic questionnaire aimed at identifying possible risk factors to increase levels of burden and Section B covered the Burden Scale for Family Caregivers. Descriptive and inferential statistics were used for analysis. Results: The majority of caregivers (67%) identified family as their main or only form of support structure. The study did not find any obvious risk factors that could indicate a relation between the level of burden and the different demographic factors. It was found that caregivers of CWSID experience moderate to severe levels of caregiver burden due to caring for their CWSID. Conclusion: As caregivers of CWSID experience severe levels of caregiver burden, the results of the present study indicate that caregivers experience this burden in various areas of living influencing their quality of life. It is recommended that a caseworker be assigned to each CWSID to decrease caregiver burden. Due to the fact that any possible contributing risk factors could not be successfully identified, further research is recommended. / Dissertation (MA (Speech-Language Pathology))--University of Pretoria, 2021. / Speech-Language Pathology and Audiology / MA (Speech-Language Pathology) / Restricted

Family members who provide care to their loved ones experience changes in their own health. The caregiver health model (CGHM) is a new model that identifies health holistically and identifies four determinant(s) that contribute to the health status of the family caregiver. The purpose is to introduce the CGHM: Hypothesis 1: the determinants of health in the CGHM contribute to the health of the Caregiver, Hypothesis 2: the determinants of health contribute to changes in the caregivers’ health at 8 and 16 weeks, and Hypothesis 3: a change in health occurs from baseline to 8 and 16 weeks. Methods: A descriptive, longitudinal design used three data collection points and five survey instruments. Community recruitment (N = 90) occurred through word of mouth and newspapers. Inclusion criteria consisted of being a family caregiver, living in a rural residence, and providing care to elders with necessary activities of daily living (ADLs) and/or instrumental ADLs (IADLs). Following a participant generated phone call to provide consent, caregivers received an initial study packet, additional packets were sent upon return of the previous packet. Analysis for the three hypotheses included multiple backwards stepwise linear regression, generalized estimating equations (GEE), and analysis of variance (ANOVA) α = 0.05. Results: A significant decrease in mental (p < 0.01) but not physical health at 8 weeks (p = 0.38) and 16 weeks (p = 0.29) occurred over time. Two determinants displayed significant (p < 0.05 or less) changes in mental and/or physical health at one or more time points. Study limitations include caregiver entry at varying times and self-report of elder nursing needs and medical conditions. Conclusions: Findings support two of the four determinants contributing to caregiver health

Bakgrund: I Sverige och globalt ses en ökning av patienter som önskar att vårdas och dö i hemmet. Tidigare forskning visar att sjuksköterskan saknar ordentligt stöd och förutsättningar för att tillhandahålla palliativ vård av hög kvalitet till patient och närstående i hemsjukvården. Närstående hade förväntningar på sig från hemsjukvården att ta en central roll av vården i hemmet. När den palliativa vården integrerades för sent i vårdförloppet ställdes det stora krav på närståendes delaktighet i hemsjukvården.  Syfte: Att beskriva närståendes upplevelser av tidig integrerad palliativ vård i hemsjukvården. Metod: En systematisk litteraturstudie inspirerad av en metasyntes. Resultatartiklar söktes i databaserna CINAHL, PubMed och PsycInfo varav 14 kvalitativa artiklar analyserades utifrån en inspiration av en metaetnografi. Kvalitetsgranskning genomfördes utifrån Critical, Appraisal, Skills, Programme, CASP. I dataanalysen framkom sex teman till resultatet. Resultat: Resultatet visade att närstående upplevde behov av ett fungerande partnerskap, vårdteamets tillgänglighet och en tydlig kommunikation med vårdteamet. När detta fungerade väl upplevde närstående en trygg och säker palliativ vård i hemmet. Slutsats: En tidig integrerad palliativ vård framkom som en viktig del i att kunna utforma vården efter närståendes behov. Genom att vårdteamet och närstående lärde känna varandra kunde en djupare relation utvecklas över tid. En djupare relation visade sig vara en förutsättning för att närstående skulle uppleva att deras behov blev tillgodosedda. / Background: In Sweden and globally, there is an increase in patients who wish to be cared for and die at home. Relatives had expectations from home health care to take a central role in care at home. When palliative care was integrated too late in the care process, the great demand was placed on the participation of relatives in home health care. Aim: To describe family caregivers experiences of early integrated palliative care in home care. Method: A systematic literature review inspired by a metasynthesis. Result articles were searched in the databases CINAHL, PubMed and PsycInfo, of which 14 qualitative articles were analyzed based on an inspiration from a metaethnography. Study quality apprasial was carried out based on Critical, Appraisal, Skills, Programme, CASP. In the data analysis, six themes emerged from the result. Result: The results showed that family caregivers experienced the need for a functioning partnership, the accessibility of the care team and a clear communication with the care team. When this worked well, family caregivers experienced safe and secure palliative care at home. Conclusion: Early integrated palliative care emerged as an important part of being able to design care according to the needs of family caregivers. By getting to know each other by the care team and family caregivers, a deeper relationship could develop over time. A deeper relationship proved to be a prerequisite for family caregivers to feel that their needs were met.

This scoping review contains a literature analysis regarding interventions used by health care workers to alleviate guilt in caregivers of patients during end-of-life care. During end-of-life care, many transitions and decisions are made that add to the burden of caregivers. Family caregivers experience many physical, financial, and emotional stressors during the journey of end-of-life care, and this can result in guilt. Feelings of guilt can lead to poorer health outcomes and coping in family caregivers and should be addressed by health providers. In this scoping review, a literature search was conducted using various key terms like "guilt," "hospice," "end-of-life care," "interventions," and "caregivers." The articles that fit the criteria were examined to find tested interventions to alleviate guilt in family caregivers of patients in end-of-life or hospice care. A total of 13 articles were analyzed and divided into three sections, interventions that directly influence guilt, interventions that indirectly influence guilt, and interventions recommended by caregivers and hospice workers. Main themes that emerged for tested and recommended interventions include shared decision making, increased communication with health care providers, increased education on disease process and available options, and an emphasis on caregiver self-care. This research is limited and can provide the framework for future interventions to be tested and applied to the care of family caregivers experiencing guilt while caring for or grieving their loved one.

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Yes / The pathways for receiving a diagnosis of a rare type of dementia are poorly understood. Diagnostic challenges decrease access to relevant health promotion activities and post-diagnostic support. This study was focused on pathways experienced by people affected by rare dementia in Wales, United Kingdom (UK), considering the practical, emotional, and economic consequences. Semi-structured interviews were completed with 10 people affected by rare dementia across Wales, UK (nine family caregivers and one person living with rare dementia). The interview data were subject to a thematic analysis and a bottom-up costing approach was used to cost the pathway journeys. Five transitional points occurred across the diagnostic pathway (initial contact, initial referral, further referrals—provider, further referrals—private, and diagnosis) alongside two further themes (i.e., involved in the diagnostic process and disputes between stakeholders). The timeliness of the diagnosis was perceived to often be subject to ‘luck’, with access to private healthcare a personal finance option to expedite the process. Higher economic costs were observed when, in retrospect, inappropriate referrals were made, or multiple referrals were required. The confusion and disputes relating to individual diagnostic pathways led to further emotional burdens, suggesting that higher economic costs and emotional consequences are interlinked. Clearer diagnostic pathways for rare dementia may prevent unnecessary service contacts, waiting times, and associated distress. Prioritising appropriate and timely service contacts leads to diagnosis and support to families and enables people to increase control over their health. Appropriate diagnostic pathways may be less costly and reduce costs for families. / This work is part of the Rare Dementia Support Impact project (The impact of multicomponent support groups for those living with rare dementia, (ES/S010467/1)) and is funded jointly by the Economic and Social Research Council (ESRC) and the National Institute for Health Research (NIHR). ESRC is part of UK Research and Innovation. Rare Dementia Support is generously supported by the National Brain Appeal (https://www.nationalbrainappeal.org/ (accessed on 1 December 2023)). The work is also funded by the Wales Centre of Ageing and Dementia Research (CADR), a collaboration between Bangor, Swansea, and Aberystwyth universities funded by Health and Care Research Wales.

Black women face significant social and economic adversities throughout their life course as intersecting identities impact their experiences of double jeopardy (gender and racial discrimination) and result in various forms of inequity. Though researchers have examined the health inequalities experienced by Black women, Black women as caregivers of their children who have been diagnosed with mental illnesses have yet to be examined in research. Gaps in knowledge exist regarding how a child's diagnosis of a mental illness impacts the parenting practices of Black women and the family dynamics. Further, the barriers to health access experienced by Black women as they navigate mental health systems and the resiliency factors and coping mechanisms employed by Black women have yet to be examined. Utilizing a grounded theory method of qualitative inquiry, this study addresses the gaps in the literature, is a response to a direct call to research, and examines the lived experiences of Black women as caregivers for children diagnosed with mental illnesses.  Findings indicated that the mothers find and navigate resources and interventions independently; they utilize formal sources as a last resort and often find those supports ineffective, and they are in a constant state of learning and teaching others about the mental health needs of their children. Though the mothers sought support, they live in a state of isolation, meeting the mental health needs of their children and the needs of others in their families, with limited support from both formal and informal sources.

Yes / In China there is a cultural expectation (Xiao, -filial piety) that offspring should provide care for their parents. However, the sustainability of this is threatened by the impact of the One-Child Policy (OCP) (1979-2015), which has resulted in a diminution in numbers of children available to care, rapid urbanisation and increase in the number of women in employment. In this context, the objective was to explore the motivations, meaning, and preparedness for future caregiving of offspring affected by the OCP. We adopted a constructivist position using a hermeneutic phenomenology approach and interviewed eight current and prospective caregivers aged 20-35 years about future caregiving responsibilities. Data were obtained through in-depth interviews, analysed using reflective Thematic Analysis. Three prominent themes: (i) Caregiving beliefs, (ii) Caregiving conditions and (iii) Contextual factors were identified under an overarching theme "Competing pressures-meanings, motivation and preparedness". Despite the inherent stress, participants envisaged providing or organising care in the future to fulfil Xiao, and most viewed long-term care settings as unviable. Ultimately, the findings suggested that the actual performance of caregiving would not always measure up to ideal expectations, resulting in 'filial discrepancy' that is, a gap between societal expectations for caregiving to older relatives and actual caregiving performance. This could adversely impact the caregivers and quality of care provided. The findings highlighted the urgent need to develop culturally attuned services, including education and training for family caregivers, health and social care professionals. / This work was supported by Research England: Quality Related Global Challenge Research Fund; University of Bradford.

Bakgrund: Inom den palliativa vården är närstående ofta en förutsättning för att den anhörige ska kunna vårdas i hemmet, trots hjälp från ett vårdteam. De närstående är en viktig del av vården då de känner den anhörige bäst och kan fungera som ett stöd i anpassningen till en ny situation. Den palliativa vården vilar på fyra hörnstenar där närståendestöd ingår. Det ligger också i sjuksköterskans ansvar att stödja närstående i syfte att främja hälsa och förhindra ohälsa.  Syfte: Syftet var att beskriva närståendes upplevelser av att vårda en anhörig i ett palliativt skede i hemmet.  Metod: Litteraturöversikten baserades på tio vetenskapliga artiklar med kvalitativ ansats, publicerade mellan åren 2003-2011. Artiklarna togs fram via databaserna CINAHL plus with full text och PubMed. Artiklarna analyserades med hjälp av Fribergs analysmetod och det skapades nya teman.     Resultat: Resultatet i studien visade att närstående som vårdar en anhörig i hemmet ofta möts av ett tungt ansvar som följs av negativa upplevelser och känslor. Dock kunde en del närstående uttrycka positiva upplevelser av vårdandet.  Närstående upplevde en fysisk och psykisk utmattning och en tillvaro där deras egna behov åsidosattes. Närstående hade svårt att bevittna den anhöriges försämring och många påtalade att deras vardagsliv hade blivit starkt påverkat. Stödet från hälso- och sjukvården lyftes ofta av närstående där de beskrev sina upplevelser av hur stödet fungerat. Likaså upplevelser av stöd från familj och vänner.  Diskussion: Resultatet har diskuterats mot litteraturöversiktens bakgrund, nya vetenskapliga artiklar och Meleis transitionsteori. I diskussionen lyftes närståendes risk för ohälsa och ett bristande stöd från hälso- och sjukvården. Författarna lyfte också hur sjuksköterskors medvetenhet om transitioner kan vara en hjälp i mötet och stödet av närstående. / Background: In palliative care family often is a prerequisite to make care for a relative at home possible despite support of a medical team. Family is an important part of the care since they are familiar to the needs of the relative and can act as support in adapting to a new situation. Palliative care rests on four cornerstones, including support of families. Moreover, it is the nurse's responsibility to support relatives in order to promote health and prevent illness.  Aim: The aim was to describe families’ experiences of caring for a relative in a palliative stage at home.   Method: The literature review was based on ten scientific articles with a qualitative approach, published between the years 2003-2011. The articles were found in the databases CINAHL plus with full text and PubMed. The articles were analyzed with the help of Friberg’s method of analysis and new themes emerged.      Result: The results of the study showed that families who care for a relative at home often face a heavy responsibility followed by negative experiences and feelings. However, some family members expressed positive experiences as a result of the care. Family members experienced a physical and mental exhaustion and a life where their needs were neglected. Family members found it difficult to witness the relative's deterioration and many complained about their everyday life being strongly affected. The support of health care services was often highlighted by family members, describing their experiences of how the support functioned. In addition, experiences of support from family and friends were expressed.  Discussion: The result has been discussed against the background of the literature review, new scientific articles and Meleis’ transition theory. The discussion highlighted family members being at risk of developing illness and a lack of support from health care services. The authors also emphasized that nurses' awareness of transitions can be of help in the meeting with and support of family members caring for a relative.