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1.
Requirements for improving health and well-being of children with Prader-Willi syndrome and their families.
Mackay, J, McCallum, Z, Ambler, GR, Vora, K, Nixon, G, Bergman, P, Shields, N, Milner, K, Kapur, N, Crock, P, et al
Journal of paediatrics and child health. 2019;(9):1029-1037
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Abstract
Prader-Willi syndrome (PWS) is a rare genetic condition with multi-system involvement. The literature was reviewed to describe neurodevelopment and the behavioural phenotype, endocrine and metabolic disorders and respiratory and sleep functioning. Implications for child and family quality of life were explored. Challenging behaviours contribute to poorer well-being and quality of life for both the child and caregiver. Recent evidence indicates healthy outcomes of weight and height can be achieved with growth hormone therapy and dietary restriction and should be the current target for all individuals with PWS. Gaps in the literature included therapies to manage challenging behaviours, as well as understanding the effects of growth hormone on respiratory and sleep function. New knowledge regarding the transition of children and families from schooling and paediatric health services to employment, accommodation and adult health services is also needed. Developing a national population-based registry could address these knowledge gaps and inform advocacy for support services that improve the well-being of individuals with PWS and their families.
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Enhancing the decision-making process when considering artificial nutrition in advanced dementia care.
De, D, Thomas, C
International journal of palliative nursing. 2019;(5):216-223
Abstract
BACKGROUND Nutritional problems often manifest during late-stage dementia, and some families may request to instigate artificial nutrition and hydration (ANH) therapies. In the US, an estimated one-third of nursing home patients with a severe cognitive impairment have artificial feeding tubes inserted. Fear that a relative could experience extreme hunger or thirst if they are not mechanically fed tends to be the main driver behind family's requests to implement artificial or enteral feeding methods. In contrast, artificial hydration is rarely given to older people with dementia in the UK and this practice of non-intervention tends to apply across all healthcare and hospice type environments. AIM: This literature review aims to evaluate the evidence to support the use and non-use of ANH. METHOD A literature review was undertaken to examine the evidence around ANH for patients with dementia to offer support to families or carers contemplating feeding choices. CONCLUSION This paper challenges the implementation of invasive ANH worldwide. It highlights how resorting to ANH does not necessarily lead to improvements in comfort, survival or wound healing. The risk of aspiration does not appear to significantly alter either.
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A metasynthesis study of family caregivers' transition experiences caring for community-dwelling persons with advanced cancer at the end of life.
Duggleby, W, Tycholiz, J, Holtslander, L, Hudson, P, Nekolaichuk, C, Mirhosseini, M, Parmar, J, Chambers, T, Alook, A, Swindle, J
Palliative medicine. 2017;(7):602-616
Abstract
BACKGROUND Family caregivers (broadly defined as family and friends) experience multiple concurrent transitions when caring for a person with advanced cancer. AIMS To (a) explore the transition experience of family caregivers caring for persons with advanced cancer living in the community, (b) describe potential triggers for transitions, (c) identify what influences this experience, and (d) develop a conceptual framework of their transition experience. DESIGN Sandelowski and Barroso's methodology for synthesizing qualitative research included (a) a comprehensive search of empirical literature, (b) quality appraisal of qualitative studies, (c) classification of studies, and (d) synthesis of the findings. DATA SOURCES Literature was sourced from six electronic data bases. Inclusion criteria were as follows: (a) published qualitative studies (and mixed-method designs) of the caregiving experience of family caregivers of community-living persons with advanced cancer at the end of life, (b) participants (caregivers and care recipients) of 18 years of age and above, (c) studies published in English in any country, and (d) studies published between 2004 and 2014. RESULTS A total of 72 studies were included in the metasynthesis. Family caregivers experience a "life transition" whereby their lives are permanently altered. The participants described the process of redefining normal which consisted of coming to terms with their situation and connecting with others. Outcomes of these processes were as follows: (a) maintaining a sense of personhood, (b) reframing hope, (c) maintaining self-efficacy, (d) finding meaning, and (e) preparing for the death of their care recipient. CONCLUSION The findings provide a framework to guide the development of supportive programs and future research.
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4.
Heart failure family-based education: a systematic review.
Srisuk, N, Cameron, J, Ski, CF, Thompson, DR
Patient education and counseling. 2016;(3):326-338
Abstract
OBJECTIVE To systematically review evidence for the efficacy of family-based education for heart failure (HF) patients and carers. METHOD A systematic review was conducted. Databases CINAHL, MEDLINE Complete, Cochrane, PubMed, Web of Science, EMBASE, PsycINFO, and Scopus were searched between 1 January 2005 and 1 May 2015. Randomised controlled trials included HF patient and carer dyads or carers alone. The primary outcome was HF knowledge. Secondary outcomes included self-care behaviour, dietary and treatment adherence, quality of life, depression, perceived control, hospital readmissions, and carer burden. RESULT Six trials reported in nine papers were included. Wide variation in the quality of the studies was found. Two studies only examined HF knowledge; a significant improvement among patients and carers was reported. Other significant findings were enhanced patient self-care, boosted dietary and treatment adherence, enriched patient quality of life, improved perceived control among patients but not carers, and reduced carer burden CONCLUSION Modest evidence was found for family-based education among HF patients and carers. Methodological shortcomings of trials signify the need for empirically sound future research. PRACTICE IMPLICATION Family-based HF education needs to include strategies that are tailored to the HF patient and carer, and sustainable in nature.
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Stroke survivors' and family members' perspectives of multimodal lifestyle interventions for secondary prevention of stroke and transient ischemic attack: a qualitative review and meta-aggregation.
Lawrence, M, Pringle, J, Kerr, S, Booth, J
Disability and rehabilitation. 2016;(1):11-21
Abstract
PURPOSE The incidence of stroke is of global concern, and the rates of recurrence are high. Many risk factors are related to lifestyle behaviours and, as such, are amenable to change. Implementation of effective secondary prevention interventions is essential; however, little is known about influences on participation and adherence. This review and meta-aggregation aimed to improve understanding of stroke survivor and family member perspectives of secondary prevention interventions. METHODS We searched 11 databases, e.g. Medline and PsycINFO. We included qualitative studies that focused on adult stroke survivors and family members who had participated in a multimodal stroke secondary prevention intervention. Critical appraisal and data extraction were performed independently by two reviewers. A meta-aggregation of qualitative findings was conducted. RESULTS Five papers were included. One hundred and three findings were extracted and grouped into 14 categories from which three synthesised findings emerged: feeling supported, acquiring knowledge and gaining confidence. CONCLUSIONS The findings highlight the perceived benefits of participation in secondary prevention group interventions from the perspective of stroke survivors and family members, i.e. feeling supported, by others with shared understanding and by knowledgeable health professionals, acquiring new knowledge and gaining confidence. These findings may be used to inform development of patient-centred interventions and thereby assist in improving health outcomes. IMPLICATIONS FOR REHABILITATION Health professionals should consider implementing group-based secondary prevention interventions. The content of group-based secondary prevention interventions should be person-centred, i.e. meaningful and relevant to the individual. Stroke survivors and family members are more likely to comply with advice and information provided by expert and experienced health professionals.
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Family Resiliency: A Neglected Perspective in Addressing Obesity in Young Children.
Sigman-Grant, M, Hayes, J, VanBrackle, A, Fiese, B
Childhood obesity (Print). 2015;(6):664-73
Abstract
BACKGROUND Traditional research primarily details child obesity from a risk perspective. Risk factors are disproportionately higher in children raised in poverty, thus negatively influencing the weight status of low-income children. Borrowing from the field of family studies, the concept of family resiliency might provide a unique perspective for discussions regarding childhood obesity, by helping to identify mediating or moderating protective mechanisms that are present within the family context. METHODS A thorough literature review focusing on (1) components of family resiliency that could be related to childhood obesity and (2) factors implicated in childhood obesity beyond those related to energy balance was conducted. We then conceptualized our perspective that understanding resiliency within an obesogenic environment is warranted. RESULTS Both family resiliency and childhood obesity prevention rely on the assumptions that (1) no one single answer can address the multifactorial nature involved with adopting healthy lifestyle behaviors and (2) the pieces in this complex puzzle will differ between families. Yet, there are limited holistic studies connecting family resiliency measures and childhood obesity prevention. Combining mixed methodology using traditional measures (such as general parenting styles, feeding styles, and parent feeding behaviors) with potential family resiliency measures (such as family routines, family stress, family functioning, and family structure) might serve to broaden understanding of protective strategies. CONCLUSIONS The key to future success in child obesity prevention and treatment may be found in the application of the resiliency framework to the exploration of childhood obesity from a protective perspective focusing on the family context.
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[Clinical Handling of Patients with Dissociative Disorders].
Okano, K
Seishin shinkeigaku zasshi = Psychiatria et neurologia Japonica. 2015;(6):399-412
Abstract
This paper discusses the way informed psychiatrists are expected to handle dissociative patients in clinical situations, with a specific focus on dissociative identity disorders and dissociative fugue. On the initial interview with dissociative patients, information on their history of trauma and any nascent dissociative symptoms in their childhood should be carefully obtained. Their level of stress in their current life should also be assessed in order to understand their symptomatology, as well as to predict their future clinical course. A psychoeducational approach is crucial; it might be helpful to give information on dissociative disorder to these patients as well as their family members in order to promote their adherence to treatment. Regarding the symptomatology of dissociative disorders, detailed symptoms and the general clinical course are presented. It was stressed that dissociative identity disorder and dissociative fugue, the most high-profile dissociative disorders, are essentially different in their etiology and clinical presentation. Dissociative disorders are often confused with and misdiagnosed as psychotic disorders, such as schizophrenia. Other conditions considered in terms of the differential diagnosis include borderline personality disorder as well as temporal lobe epilepsy. Lastly, the therapeutic approach to dissociative identity disorder is discussed. Each dissociative identity should be understood as potentially representing some traumatically stressful event in the past. The therapist should be careful not to excessively promote the creation or elaboration of any dissociative identities. Three stages are proposed in the individual psychotherapeutic process. In the initial stage, a secure environment and stabilization of symptoms should be sought. The second stage consists of aiding the "host" personality to make use of other more adaptive coping skills in their life. The third stage involves coaching as well as continuous awareness of their comorbid psychiatric conditions. Lastly, factors preventing the patients' smooth recovery process are mentioned. They include their contact with past and current aggressors, chronic and ongoing stress within the family, including abuse and violence, and comorbid conditions such as depression and chronic medical conditions.
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Cochrane corner: psychological interventions for individuals with cystic fibrosis and their families.
Goldbeck, L, Fidika, A, Herle, M, Quittner, AL
Thorax. 2015;(11):1089-91
Abstract
Psychological issues associated with cystic fibrosis may arise from the patients' lifelong disease- and treatment-related burden. This Cochrane Review aimed to determine psychosocial and physical outcomes of psychological interventions. Trial registries, databases and professional networks were used to identify relevant studies. Altogether, 16 studies involving 556 participants were included. They were heterogeneous in their methods, design, target groups, and outcomes. Overall, the current evidence for psychological interventions is insufficient. Preliminary evidence was available for interventions targeting specific aspects of the treatment regimen, such as behavioural nutrition interventions.
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Interdisciplinary teamwork for the treatment of people with Parkinson's disease and their families.
Giladi, N, Manor, Y, Hilel, A, Gurevich, T
Current neurology and neuroscience reports. 2014;(11):493
Abstract
Parkinson's disease (PD) is a chronic progressive neurodegenerative and multidimensional disease that involves a range of disabling motor and nonmotor symptoms. These symptoms can have a major impact on the quality of life of PD patients. The focus of this article is to stress the importance of the interdisciplinary team intervention approach in the treatment of patients with PD. The team approach uses experts in PD from different health care professions, including a neurologist, a nurse, a speech and language therapist, a physiotherapist, a social worker, a psychiatrist, an occupational therapist, a sexologist, and a dietician. The major aim of the team and of teamwork is to provide professional care in all motor and nonmotor aspects of PD throughout the course of the disease. There are different models of multidisciplinary teams: inpatient facility, community rehabilitation facility, and synchronized multiprofessional treatment in the community. The Tel Aviv Sourasky Medical Center model of interdisciplinary care was designed to create a coordinated multidisciplinary team in the Movement Disorders Unit. The role of each team member and their professional objective are described. Their collaboration is by design a promotion of a team goal for maintaining and enhancing the quality of life of PD patients and their families.
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Child and family adjustment following pediatric solid organ transplantation: factors to consider during the early years post-transplant.
Brosig, C, Pai, A, Fairey, E, Krempien, J, McBride, M, Lefkowitz, DS
Pediatric transplantation. 2014;(6):559-67
Abstract
Adjusting to life after transplant can be challenging to pediatric solid organ transplant recipients and their families. In this review, we discuss a number of important factors to consider during the first 2-3 yr after transplant (defined as the "early years"), including transitioning from hospital to home, returning to physical activity, feeding and nutrition, school reentry, potential cognitive effects of transplant, family functioning, and QOL. We highlight steps that providers can take to optimize child and family adjustment during this period.