Impact on the family

2021 ◽  
pp. 111-125
Author(s):  
Veronica Dussel ◽  
Barbara Jones
Keyword(s):  
Social Care ◽  
Family Members ◽  
Well Being ◽  
Family Unit ◽  
Health And Social Care ◽  
The Family ◽  
Threatening Condition ◽  
Life Threatening ◽  
Limiting Condition ◽  
The Impact

In this chapter, we will focus on the importance of caring for the family of a child with a life-limiting condition (LLC) or life-threatening condition as a unit, each of the family members being integral to the well-being and care of the others. We recognize that the family unit itself is embedded within a wider context including the health and social care system, and more broadly within its society and culture. We discuss the concept of family, exploring the impact of having a child with an LLC, and how families adjust to this. We then expand on considerations about how to offer effective and timely support and help. We have included parents’ narratives with the aim of adding depth to the discussion, and in recognition of the truth of families’ own experiences.

Experience and impact of the 1-2-3 magic parent programme for children with ADHD on the family unit from the mothers’ perspectives: A narrative analysis

2021 ◽  
pp. 136749352110399
Author(s):  
Stephanie Allen ◽  
Stephen K Bradley ◽  
Eileen Savage
Keyword(s):  
Narrative Analysis ◽  
Family Members ◽  
Study Data ◽  
Unintended Consequences ◽  
Structured Interviews ◽  
Children With Adhd ◽  
Family Unit ◽  
The Family ◽  
Narrative Constructions ◽  
The Impact

Parent programmes are often used in the clinical management of children with ADHD. Research into parent programmes has predominantly been concerned with their effectiveness and much less attention has been paid to the impact that they may be having on the family and the inter-relationships between family members. This study explores the perspectives and experiences of parents of children with ADHD, who participated in a parent programme, including its impact on the family unit. A purposive sample of six mothers of children with ADHD who completed a 1-2-3 Magic parent programme in Ireland was invited to take part in this qualitative study. Data were collected by means of individual in-depth, semi-structured interviews and a narrative inquiry approach further informed analysis of the interview data. Two major narrative constructions of experience: ‘parent programme as positive’ and ‘parent programme as negative’ were identified. Outcomes from this study illustrated some unintended consequences caused by the parent programme (i.e. sibling rivalry and conflict arising between family members). Mothers believed that the parent programme was a beneficial intervention, but it was not without its flaws and they felt it was helpful for their family when used in conjunction with other supports and mediations.

Cognitive Decline and the Changing Self in Relationship

2015 ◽  
pp. 61-75
Author(s):  
Darby Morhardt ◽  
Marcia Spira
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Cognitive Decline ◽  
Family Member ◽  
Family Members ◽  
Well Being ◽  
Family Roles ◽  
The Family ◽  
Person With Dementia ◽  
The Impact

When a member of a family is diagnosed with Alzheimer's disease, the impact of the disease reverberates throughout the relationships within the family. This paper explores the challenges and strengths within one family as members manage and cope with Alzheimer's disease. The person with dementia and his family members are individually interviewed and each person explores the consequences of the disease on personal well-being as well as the relationships within the family. The family demonstrates how dementia in one family member demands flexibility in family roles as they navigate life through the challenges of living with dementia.

scholarly journals N07 A qualitative study of the impact of inflammatory bowel disease on partners

2021 ◽  
Vol 15 (Supplement_1) ◽  
pp. S611-S612
Author(s):  
P Thapwong ◽  
C Norton ◽  
H Terry ◽  
W Czuber-Dochan
Keyword(s):  
Inflammatory Bowel Disease ◽  
Everyday Life ◽  
Bowel Disease ◽  
Social Life ◽  
Negative Impact ◽  
Family Members ◽  
Well Being ◽  
Health And Social Care ◽  
Inflammatory Bowel ◽  
The Impact

Abstract Background Inflammatory Bowel Disease (IBD) not only impacts the quality of life of the patient, but also affects their family members. Studies to date have provided an understanding of impact of IBD and IBD implications for people with IBD. However, little is known about the impact of IBD on their family members. Therefore, the current study aimed to explore the lived experience of people with IBD and their family members regarding the impacts of IBD on family members and their coping methods. Methods Twelve participants, including six people with IBD with their six partners, were purposively selected, no other family members (parents / children, sibling) came forward to participate in the study. The in-depth, semi-structured online interviews were conducted via Skype, Zoom, or Microsoft Teams between February-June 2020. Interviews were audio-recorded, transcribed verbatim, and analysed using inductive thematic analysis by Braun and Clarke. Results Four main themes emerged during the analysis under the central theme “our relationship with IBD, for better or worse”. IBD affected the partners in terms of their own relationship, relationship with others, everyday life, and emotional and mental well-being. The theme “our relationship” showed the impact of IBD on the relationship between a couple, including the intimate relationship, family planning, role change as partner and carer, and the importance of honest communication. IBD also affected wider relationships with family, children, and social life, but teamwork could mediate negative impact in relationships. Emotional well-being was impacted by living in constant fear and guilt. Humour and knowledge of IBD reduced negative impacts. IBD impacts on everyday life (diet, finances, and travel) for both patients and partners. Planning for uncertain situations was helpful to reduce restrictions. Conclusion The study provides an understanding of IBD impact on partners and the coping strategies from patients and partners’ perspectives. There are wide-ranging implications for health and social care professionals caring for people with IBD and their families. Social support has been recognised as a vital buffering mechanism in facilitating an individual’s adjustment to IBD. Healthcare professionals and researchers may integrate a bio-psycho-social approach into their work with IBD family members. There is a need to develop interventions to help family members of IBD patients to better cope with the illness and to have a more fulfilling life.

scholarly journals Does a social prescribing ‘holistic’ link-worker for older people with complex, multimorbidity improve well-being and frailty and reduce health and social care use and costs? A 12-month before-and-after evaluation

2019 ◽  
Vol 20 ◽  
Author(s):  
Julian Elston ◽  
Felix Gradinger ◽  
Sheena Asthana ◽  
Caroline Lilley-Woolnough ◽  
Sue Wroe ◽  
...  
Keyword(s):  
Older People ◽  
Service Use ◽  
Social Care ◽  
Patient Activation ◽  
Well Being ◽  
Long Term Conditions ◽  
Social Prescribing ◽  
Health And Social Care ◽  
Before And After ◽  
The Impact

Abstract Aim: To evaluate the impact of ‘holistic’ link-workers on service users’ well-being, activation and frailty, and their use of health and social care services and the associated costs. Background: UK policy is encouraging social prescribing (SP) as a means to improve well-being, self-care and reduce demand on the NHS and social services. However, the evidence to support this policy is generally weak and poorly conceptualised, particularly in relation to frail, older people and patient activation. Torbay and South Devon NHS Foundation Trust, an integrated care organisation, commissioned a Well-being Co-ordinator service to support older adults (≥50 years) with complex health needs (≥2 long-term conditions), as part of its service redesign. Methods: A before-and-after study measuring health and social well-being, activation and frailty at 12 weeks and primary, community and secondary care service use and cost at 12 months prior and after intervention. Findings: Most of the 86 participants achieved their goals (85%). On average health and well-being, patient activation and frailty showed a statistically significant improvement in mean score. Mean activity increased for all services (some changes were statistically significant). Forty-four per cent of participants saw a decrease in service use or no change. Thirteen high-cost users (>£5000 change in costs) accounted for 59% of the overall cost increase. This was largely due to significant, rapid escalation in morbidity and frailty. Co-ordinators played a valuable key-worker role, improving the continuity of care, reducing isolation and supporting carers. No entry-level participant characteristic was associated with change in well-being or service use. Larger, better conceptualised, controlled studies are needed to strengthen claims of causality and develop national policy in this area.

scholarly journals Estimating the current and future prevalence of life-limiting conditions in children in England

2020 ◽  
pp. 026921632097530 ◽  
Author(s):  
Lorna K Fraser ◽  
Deborah Gibson-Smith ◽  
Stuart Jarvis ◽  
Paul Norman ◽  
Roger C Parslow
Keyword(s):  
Population Based ◽  
Population Projections ◽  
Diagnostic Code ◽  
Hospital Data ◽  
Care Needs ◽  
Health And Social Care ◽  
Threatening Condition ◽  
Pakistani Origin ◽  
Life Threatening ◽  
Limiting Condition

Background: Previous studies showed increasing number of children with a life-limiting or life-threatening condition who may benefit from input from pediatric palliative care services. Aim: To estimate the current prevalence of children with a life-limiting condition and to model future prevalence of this population. Design: Observational study using national inpatient hospital data. A population-based approach utilizing ethnic specific population projections was used to estimate future prevalence. Setting/participants: All children aged 0–19 years with a life-limiting condition diagnostic code recorded in Hospital Episodes Statistics data in England from 2000/01 to 2017/18. Results: Data on 4,543,386 hospital episodes for 359,634 individuals were included. The prevalence of children with a life-limiting condition rose from 26.7 per 10,000 (95%CI 26.5–27.0) in 2001/02 to 66.4 per 10,000 (95% CI: 66.0–66.8) in 2017/18. Using a more restricted definition of a life-limiting condition reduced the prevalence from 66.4 to 61.1 per 10,000 (95%CI 60.7–61.5) in 2017/18. Highest prevalence was in the under 1-year age group at 226.5 per 10,000 and children with a congenital abnormality had the highest prevalence (27.2 per 10,000 (95%CI: 26.9–27.5)). The prevalence was highest among the most deprived group and in children of Pakistani origin. Predicted future prevalence of life-limiting conditions ranged from 67.0 (95%CI 67.7–66.3) to 84.22 (95%CI 78.66–90.17) per 10,000 by 2030. Conclusions: The prevalence of children with a life-limiting or life-threatening condition in England has risen over the last 17 years and is predicted to increase. Future data collections must include the data required to assess the complex health and social care needs of these children.

scholarly journals Best practice for providing social care and support to people living with concurrent sight loss and dementia: professional perspectives

2016 ◽  
Vol 20 (2) ◽  
pp. 86-93 ◽  
Author(s):  
Simon Chester Evans ◽  
Jennifer Bray
Keyword(s):  
Information Needs ◽  
Social Care ◽  
Well Being ◽  
Small Sample ◽  
Content Type ◽  
Care And Support ◽  
Geographical Regions ◽  
Health And Social Care ◽  
Sight Loss ◽  
The Impact

Purpose – Approximately 100,000 people in the UK aged 75 and over have concurrent dementia and sight loss, but current understanding of their experiences, needs and preferences is limited. The purpose of this paper is to report on a research project that explored the provision of social care and support for older people with both conditions. Design/methodology/approach – The project was a collaboration between the universities of York, Worcester, Bournemouth and Cambridge, supported by the Thomas Pocklington Trust and the Housing and Dementia Research Consortium. Data for this paper were drawn from focus groups held in 2013 involving 47 professionals across the dementia, sight loss and housing sectors. Findings – Thematic analysis identified five main barriers to providing high-quality, cost-effective social care and support: time constraints; financial limitations; insufficient professional knowledge; a lack of joint working; and inconsistency of services. The requirements of dementia and sight loss often conflict, which can limit the usefulness of equipment, aids and adaptations. Support and information needs to address individual needs and preferences. Research limitations/implications – Unless professionals consider dementia and sight loss together, they are unlikely to think about the impact of both conditions and the potential of their own services to provide effective support for individuals and their informal carers. Failing to consider both conditions together can also limit the availability and accessibility of social care and support services. This paper is based on input from a small sample of self-selecting professionals across three geographical regions of England. More research is needed in this area. Practical implications – There are growing numbers of people living with concurrent dementia and sight loss, many of whom wish to remain living in their own homes. There is limited awareness of the experiences and needs of this group and limited provision of appropriate services aids/adaptations. A range of measures should be implemented in order to support independence and well-being for people living with both conditions and their family carers. These include increased awareness, improved assessment, more training and greater joint working. Social implications – People living with dementia or sight loss are at high risk of social isolation, increasingly so for those with both conditions. Services that take an inclusive approach to both conditions can provide crucial opportunities for social interaction. Extra care housing has the potential to provide a supportive, community-based environment that can help residents to maintain social contact. Originality/value – This paper adds much-needed evidence to the limited existing literature, and reflects the views of diverse professionals across housing, health and social care.

scholarly journals Does health and social care provision for the community dwelling older population help to reduce unplanned secondary care, support timely discharge and improve patient well-being? A mixed method meta-review of systematic reviews

F1000Research ◽  
2020 ◽  
Vol 9 ◽  
pp. 857
Author(s):  
Shoba Dawson ◽  
Patience Kunonga ◽  
Fiona Beyer ◽  
Gemma Spiers ◽  
Matthew Booker ◽  
...  
Keyword(s):  
Systematic Reviews ◽  
Social Care ◽  
Well Being ◽  
Community Dwelling ◽  
Care Provision ◽  
Older Population ◽  
Health And Social Care ◽  
Meta Review ◽  
The Impact ◽  
Research Recommendations

Background: This study aimed to identify and examine systematic review evidence of health and social care interventions for the community-dwelling older population regarding unplanned hospital admissions, timely hospital discharge and patient well-being. Methods: A meta-review was conducted using Joanna Briggs and PRISMA guidance. A search strategy was developed: eight bibliographic medical and social science databases were searched, and references of included studies checked. Searches were restricted to OECD countries and to systematic reviews published between January 2013–March 2018. Data extraction and quality appraisal was undertaken by one reviewer with a random sample screened independently by two others. Results: Searches retrieved 21,233 records; using data mining techniques, we identified 8,720 reviews. Following title and abstract and full-paper screening, 71 systematic reviews were included: 62 quantitative, seven qualitative and two mixed methods reviews. There were 52 reviews concerned with healthcare interventions and 19 reviews concerned with social care interventions. This meta-review summarises the evidence and evidence gaps of nine broad types of health and social care interventions. It scrutinises the presence of research in combined health and social care provision, finding it lacking in both definition and detail given. This meta-review debates the overlap of some of the person-centred support provided by community health and social care provision. Research recommendations have been generated by this process for both primary and secondary research. Finally, it proposes that research recommendations can be delivered on an ongoing basis if meta-reviews are conducted as living systematic reviews. Conclusions: This meta-review provides evidence of the effect of health and social care interventions for the community-dwelling older population and identification of evidence gaps. It highlights the lack of evidence for combined health and social care interventions and for the impact of social care interventions on health care outcomes. Registration: PROSPERO ID CRD42018087534; registered on 15 March 2018.

Health and social care in an age of austerity

2017 ◽  
Author(s):  
Charles West
Keyword(s):  
Social Support ◽  
Health Care ◽  
Social Care ◽  
Market Competition ◽  
Well Being ◽  
Care Services ◽  
The Social ◽  
Health And Social Care ◽  
The Uk ◽  
The Impact

This chapter examines the impact of austerity policies on health, well-being and social care in the UK. In particular, it considers the health care provided by the National Health Service (NHS) and other health services, as well as the social care that is normally paid for, rather than the wider social support provided by family, friends, neighbours or colleagues. The discussion begins with an overview of the economic case for spending on health and social care, and more specifically the logic in pursuing spending policies that carry a high economic multiplier. The chapter then emphasises the duty of governments and those working in health care to achieve good value for the money spent, citing the case of the UK NHS. It also describes five principles underlying market competition in the context of health care before concluding with an analysis of social care services in the UK.

“Something to get out of bed for”: creative arts for a happily ageing population

2016 ◽  
Vol 20 (4) ◽  
pp. 190-194 ◽  
Author(s):  
Paul Cann
Keyword(s):  
Older People ◽  
Social Care ◽  
Well Being ◽  
Creative Arts ◽  
Care Providers ◽  
Policy Makers ◽  
Content Type ◽  
The Arts ◽  
Health And Social Care ◽  
The Impact

Purpose The purpose of this paper is to relate the growing body of evidence about the impact of creative arts on the health and well-being of older people to the debate about active ageing, prevention and demographic change. Design/methodology/approach It draws on a range of researched examples in order to illustrate the impact of three different art forms – singing, dance and visual arts – on health and well-being. Findings The evidence exists in increasing volume and diversity that creative arts not only improve personal feelings of well-being but also key physiological measures. The arts are increasingly recognised as playing a major potential role in the delivery of health and social care interventions. Greater recognition and action are needed from policy makers, commissioners and care providers in health and social care that the arts are not a marginal and elitist avenue but a mainstream tool supporting older people to remain active, healthy and independent. Importantly, they represent a powerful source of motivation, agency and confidence. Social implications It argues that creative arts should become an integral and more prominent part of ageing policy. The evidence exists in increasing volume and diversity that creative arts not only improve personal feelings of well-being but also key physiological measures. The arts are increasingly recognised as playing a major potential role in the delivery of health and social care interventions. Greater recognition and action are needed from policy makers, commissioners and care providers in health and social care that the arts are not a marginal and elitist avenue but a mainstream tool supporting older people to remain active, healthy and independent. Importantly, they represent a powerful source of motivation, agency and confidence. Originality/value An important research challenge remains, namely to plot cause (arts intervention) and effect (reduced demand on health and care services), if the creative arts are to occupy a central place in commissioning investment at a time of acute financial stringency in the public sector.

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