Family Caregivers/Carers Research Papers - Academia.edu (original) (raw)

Violence against adolescent girls occurs at alarmingly high rates in conflict-affected settings, in part due to their increased vulnerability from their age and gender. However, humanitarian programming efforts have historically focused either on child abuse prevention or intimate partner violence prevention and have not fully addressed the specific needs of adolescent girls, including engagement of caregivers to reduce risk of violence against adolescent girls. Thus, the objectives of this analysis are to examine the whether gendered and parental attitudes of caregivers in South Kivu, Democratic Republic of Congo (DRC) were associated with their adolescent girls' experiences of violence and girls' attitudes towards IPV. Cross-sectional data from 869 girls (10–14 years) and their caregivers (n = 764) were drawn from a baseline assessment of a violence prevention evaluation conducted in 2015. Findings suggest that female caregiver's gender equitable attitudes for adults may be associated with reduced odds of sexual abuse and less acceptance of IPV for adolescent girl children. Parenting attitudes and beliefs and gender equity for girl children were not associated with violence risk for girls, while increased accepting attitudes of negative discipline were only associated with lowered odds of sexual abuse. Understanding of caregivers' attitudes may provide potential insight into how to more effectively engage and develop programming for caregivers to promote the safety and well-being of adolescent girls.

- by Lindsay Stark
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- Parenting, Gender Equality, Family Caregivers/Carers, Violence Against Women

Carers provide unpaid support to family or friends with physical or mental health problems. This support may be within the domain of activities of daily living, such as personal care, or providing additional emotional support. While research has explored the carer experience within the National Health Service in the United Kingdom, it has not focused specifically on carers of individuals with a diagnosis of borderline personality disorder (BPD). Eight carers for those with a diagnosis of BPD were invited to take part in two focus groups. The first carers' focus group, entitled 'The role of Mental Health services,' produced four super-ordinate themes. The second carers' focus, entitled 'Experiences in the Community,' produced six super-ordinate themes. It seems carers of those with a diagnosis of BPD are continuing to be overlooked by mental health services, and subsequently require more support to ensure their own well-being.

In the context of current and expected demographic changes, the issues of which services the welfare state should offer and, ultimately, the very function of the welfare state are currently debated in Norway. The political discourse on health and care services for older adults has morphed into an accepted reality in which the system must be altered, prompting policy makers and stakeholders to find new and novel solutions to problems associated with population ageing. In this paper, we discuss one such proposed solution: the transformation of health and care services for the older adult population through the increased involvement of volunteers. We ask how volunteer efforts are articulated and delineated through official accounts and discuss the implications of such an articulation and delineation. We seek answers to these questions through a critical discourse analysis of recent governmental white papers. We investigate, in other words, volunteer efforts as a political instrument. W...

Grandparents play a vital role in providing childcare to families. Qualitative research and evidence from parents raise concerns that it is grandparents who are socioeconomically disadvantaged who provide grandchild care more regularly, perform more intensive tasks, and care out of financial necessity. However, no European studies have investigated these issues at population level. This study is based on grandparents aged 50+ who looked after grandchildren. Data are from wave 8 of the nationally representative English Longitudinal Study of Ageing (2016/2017). We exploit newly collected information on frequency of grandchild care, activities, and reasons for care. Using multinomial regressions, we first examined the extent to which grandparents' socioeconomic characteristics (wealth and education) are associated with frequency of grandchild care. Second, using logistic regressions, we investigated whether wealth and education are associated with activities and reasons for grandchild care. Overall, grandparents from disadvantaged socioeconomic backgrounds were more likely to provide more regular childcare. Similarly, grandparents in the lowest wealth quartile were more involved in hands-on activities (cooking, taking/collecting grandchildren to/from school), whereas highly educated grandparents were more likely to help grandchildren with homework. Finally, better-off grandparents were more likely to look after grandchildren to help parents and provide emotional support and less likely to report difficulty in refusing to provide care. Our findings show that grandparental childcare varies by socioeconomic status with more intensive childcare activities falling disproportionately on those with fewer resources, and this may act to exacerbate existing socioeconomic inequalities in later life.

- by Giorgio Di Gessa
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- Socioeconomics, Education, Aging, Family Caregivers/Carers

Being a grandparent is an important and valued role for many older adults, who often have strong views about the type of grandparent they will be and what they will teach their grandchild. When their grandchild has a disability, grandparents may have to significantly adjust their expectations and interactions. This research explores if and how having a grandchild with a disability influences grandparents' sense of identity and enactment of the grandparent role. Using qualitative purposive sampling, semi-structured interviews were conducted with 22 grandparents of children with an intellectual and/or physical disability residing in Brisbane, Australia. A thematic analysis identified three key themes characterising grandparent's views: formation of grandparenting identity, styles of grandparenting, and role enactment. The results highlight the critical role of grandparents when a child has a disability, illustrating that the grandparenting experience and role enactment may be universal with only the context and delivery varying.

- by Laurie Buys
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- Family Caregivers/Carers, Disbility, Physical disability, Clinical Sciences

Objectives: Current theoretical constructs on the utilization of formal support for Latino caregivers focus on familism and exclude the cultural values represented in the service system. The purpose of this paper is to highlight the experience of care for Latino family caregivers to persons with Alzheimer's disease and related dementias (ADRD). We also examine the cultural congruence between provider perspectives with the expectations of Latino ADRD caregivers. Method: We conducted extended interviews with 24 Latino ADRD caregivers and 10 service providers. Interview transcripts were coded and analyzed using a grounded theory approach. Results: Our study provides a deeper understanding of Latino caregiving experiences and highlights some of the structural and systematic issues in current systems of caregiver support. While Latino families have very specific notions of care, by upholding notions of familism, there is a tendency to not look deeper into how they may be better supported in caregiving and fall into the "culture trap." The assumption that family should be the natural support network for older adults may lead to health and social systems of care to ignore the specific needs of the Latino population. Discussion: Services are being provided under a model that was established four decades ago and may not reflect current realities. The concept of "an ethics of care" allows us to move beyond familism and explain that underutilization of services may also be due in part to the cultural incongruence between what service providers offer and the perceived needs of Latino caregivers.

- by Elaine Acosta and +1
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- Alzheimer's Disease, Family Caregivers/Carers, Support Services, U.S. Hispanic and Latino community

Findings from Suzanie Adina MAT SAAT’s PhD research at Loughborough University that explored the experiences of Malay children whose parent has cancer and their information needs and behaviour to cope with the challenges they faced as... more

- by Suzanie Saat
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- Information Science, Health Promotion, Cancer, Family Caregivers/Carers

The moral argument for supporting carers is clear and irrefutable. This report takes the argument beyond morality and demonstrates that supporting carers improves health outcomes for patients and carers; reduces unwanted admissions, readmissions and delayed discharges in hospital settings; and reduces unwanted residential care admissions and length of stays.

Hospice nursing home family end-of-life palliative care a b s t r a c t Objective: Even though more than 25% of Americans die in nursing homes, end-of-life care has consistently been found to be less than adequate in this setting. Even for those residents on hospice, end-of-life care has been found to be problematic. This study had 2 research questions; (1) How do family members of hospice nursing home residents differ in their anxiety, depression, quality of life, social networks, perceptions of pain medication, and health compared with family members of community dwelling hospice patients? (2) What are family members' perceptions of and experiences with end-of-life care in the nursing home setting? Methods: This study is a secondary mixed methods analysis of interviews with family members of hospice nursing home residents and a comparative statistical analysis of standard outcome measures between family members of hospice patients in the nursing home and family members of hospice patients residing in the community. Results: Outcome measures for family members of nursing home residents were compared (n ¼ 176) with family members of community-dwelling hospice patients (n ¼ 267). The family members of nursing home residents reported higher quality of life; however, levels of anxiety, depression, perceptions of pain medicine, and health were similar for hospice family members in the nursing home and in the community. Lending an understanding to the stress for hospice family members of nursing home residents, concerns were found with collaboration between the nursing home and the hospice, nursing home care that did not meet family expectations, communication problems, and resident care concerns including pain management. Some family members reported positive end-of-life care experiences in the nursing home setting. Conclusion: These interviews identify a multitude of barriers to quality end-of-life care in the nursing home setting, and demonstrate that support for family members is an essential part of quality end-of-life care for residents. This study suggests that nursing homes should embrace the opportunity to demonstrate the value of family participation in the care-planning process.

- by Alexandria Lewis
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- Mental Health, Family, Quality of life, Quality of Mental Health Care

The current state of art report aims to enquire on the actual situation in Italy by combining a literature, policy and procedure review on the following topics: migrants and refugees’ employment & unemployment rates, as well as their educational status, theoretical and methodological approaches of migrants and refugees’ integration into the labour market; together with a field research analysis conducted through the delivery of questionnaires and focus groups among migrants, refugees and stakeholders in Sicily.

- by Luisa Zappalà
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- Family Caregivers/Carers, Migrant workers, Caregiving, Migrant Domestic Workers

En gériatrie, les décisions de soins touchent généralement trois groupes d'acteurs: les patients, les familles et les professionnels de la santé. Plus spécifiquement, la triade de soins lors d'une prise de décision médicale est composée de la personne âgée, de son proche aidant et du médecin. Le patient âgé est central dans la prise de décision; sans lui, I'action décisionnelle risquerait de ne pas répondre à ses objectifs de soins. Ensuite, il est fréquent qu'un membre de la famille soit identifié comme proche aidant. Enfin, les écrits traitant du processus décisionnel amenant à un choix de traitement s'intéressent principalement au rôle du médecin. Le médecin est un interlocuteur privilégié, car il joue un rôle très actif dans le processus décisionnel lié au choix de traitements; il a un rôle pivot pour faire le point concernant l'état de santé du patient et pour discuter des options de traitements disponibles. Pour mieux comprendre l'expérience de chacun des acteurs de la triade de soins lors du processus décisionnel Iié au choix de traitements en soins palliatifs gérontologiques, nous avons tenté de répondre à la question suivante : quels facteurs influenceront individuellement la personne âgée, le proche aidant et le médecin dans le processus décisionnel menant à un choix de traitement en fin de vie ? En premier lieu, une recension des écrits est présentée suivie de la méthode choisie pour cette étude. Ensuite, les résultats pour chacun des types d'acteurs de la triade seront soulevés. Nous terminerons en présentant la discussion et la conclusion.

- by Marie Beaulieu
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- Palliative Care, Family Caregivers/Carers, Elderly

Objectives: Women who combine formal and informal caregiving roles represent a unique, understudied population. In the literature, healthcare employees who simultaneously provide unpaid elder care at home have been referred to as double-duty caregivers. The present study broadens this perspective by examining the psychosocial implications of double-duty child care (child care only), double-duty elder care (elder care only), and triple-duty care (both child care and elder care or " sandwiched " care). Method: Drawing from the Work, Family, and Health Study, we focus on a large sample of women working in nursing homes in the United States (n = 1,399). We use multiple regression analysis and analysis of covariance tests to examine a range of psychosocial implications associated with double-and triple-duty care. Results: Compared with nonfamily caregivers, double-duty child caregivers indicated greater family-to-work conflict and poorer partner relationship quality. Double-duty elder caregivers reported more family-to-work conflict, perceived stress, and psychological distress, whereas triple-duty caregivers indicated poorer psychosocial functioning overall. Discussion: Relative to their counterparts without family caregiving roles, women with combined caregiving roles reported poorer psychosocial well-being. Additional research on women with combined caregiving roles, especially triple-duty car-egivers, should be a priority amidst an aging population, older workforce, and growing number of working caregivers.

- by Kelly D Chandler (Davis)
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- Family Caregivers/Carers

Aim As the population ages, the problem of dementia increases and affects a growing number of people. People with mental illness are known to be stigmatised and this has been the subject of numerous studies. There have been contradictory... more

- by Katarzyna M Lion
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- Neuroscience, Neurology, Psychiatry, Dementia

Background: Impaired insight into illness is common during early psychosis and has been associated with treatment delays and poorer long-term outcomes. The relationship between patients' insight into illness and their caregivers' knowledge about psychosis is putatively associated with treatment outcome but there is limited research about this. This pilot study was designed to test the hypothesis that caregivers' levels of insight into illness is associated with patients' insight into illness in early psychosis and would be related to caregivers' levels of critical, rejecting attitudes toward patients. Methods: Patients with schizophrenia or schizoaffective disorder within 5 years of psychosis onset (n= 14) and caregivers (n= 14) of the patients' choosing were studied. Insight into illness was assessed in patients using the Scale to assess Unawareness of Mental Disorder (SUMD). Caregiver insight into illness was assessed with a modified version of the SUMD with questions rephrased to probe caregivers' understanding of the patients' illness. Caregivers' critical attitudes toward patients were assessed with the Patient Rejection Scale (PRS). Results: Significant correlations were found between patients' and caregivers' awareness of need for treatment (r = .55, p = .02), awareness of symptoms (r = .48, p = .04) and between caregivers' awareness of illness and critical attitudes toward patients (r = .65, p = .01). Conclusions: These findings suggest that caregivers' emotional characteristics and levels of insight into illness may be related to insight into illness in patients. Implications for family psychoeducational approaches to impairments of insight into illness during early psychosis are discussed.

- by Benjamin Brent, M.D., M.S., FABP
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- Psychosis, Schizophrenia, Family Caregivers/Carers, Insight
- by Ivana Chan
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- Geriatrics, Gerontology, Family Caregivers/Carers, Dementia Care

Training courses and workshops:
1. Training courses for elderly caregivers.
2. Intensive training courses in Geriatric Medicine and Gerontology (for physicians and for workers in the field of caring of the elderly).
3. Geriatric training program for the Surgical Specialties.
4. Training program in wounds, ostomy and continence care.
5. Geriatric problems and its relation with language and speech disturbance.

Il termine distress indica un’esperienza spiacevole, di natura psicologica, sociale, spirituale che riduce il coping efficace verso il cancro, i suoi sintomi fisici e il suo trattamento. Il distress di malattia sul paziente si riflette anche sul distress esperito dai caregiver. Essi vanno incontro a molteplici difficoltà che configurano la cosiddetta “Caregiver Stress Syndrome”: condizione debilitante che caratterizza persone che si prendono cura di pazienti con patologie croniche. Questo studio si propone di confrontare il distress emotivo del paziente oncologico e del caregiver elettivo. I pazienti (N=100) e i loro caregiver elettivi (N=100) afferivano alla V divisione di Medicina Interna della A.O.U. Vanvitelli. I criteri di inclusione erano: età:38-82 anni; diagnosi oncologica: 6 mesi-3 anni precedenti al reclutamento; sopravvivenza stimata: 6 mesi-1 anno; punteggio alla KPS: 50-60. I pazienti e i caregiver erano intervistati separatamente. Lo strumento utilizzato è stato il “Termometro del Distress”. Lo studio non ha evidenziato differenze significative (T= 1.468; p= 0.143) tra il distress dei pazienti (M=6.66, DS= 2.35) e dei caregiver (M=5.90, DS= 2.77), accoppiati uno a uno, i cui livelli sono risultati di grado medio. La rilevazione di pari livelli di distress nei pazienti e nei caregiver conferma l’ipotesi di letteratura che il paziente e i familiari rispondono al cancro come unico sistema emozionale. Gli interventi conseguenti sono mirati alla facilitazione dell’espressività emotiva e alla condivisione dei sentimenti di frustrazione, rabbia e dolore depressivo scatenati dalla malattia, nonché alla ristrutturazione cognitiva di tale esperienza.

- by Violetta Caserta and +2
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- Psychology, Oncology, Family Caregivers/Carers, Psychooncology

Cancer is one of the diseases which have severe psychological and physiological implications in the affected patients, and it gets an even uglier form in case of childhood cancer that engulfs the entire household. The devastating nature of the childhood cancer causes a wave like effect which goes from adolescent to the parents/caregivers/family, making it a family disease. Along with the distressing effects and side effects of cancer, the adolescents are constantly grappled with the developmental issues, whereas, family/caregivers struggle with a unique adaptation and evolution, due to the challenges posed by the disease. The current paper is a literature review of resilience among adolescent cancer patients (ACPs) and their
caregivers, in Malaysian backdrop. It offers an insight into the gap in the current knowledge and highlights the need for an analysis of the concept of resilience among the targeted population in accordance with specific cultural considerations. The review primarily based upon studies targeting adolescents with the disease and their caregivers, their stressors; and processes of adjustment and coping while highlighting the cultural and religious aspect. It established the fact that in Malaysia,
ACPs have hardly been studied, unlike their caregivers. It’s essential to consider the optimistic concepts such as resilience as a foundation stone for those who are struggling with health challenges, directly or indirectly, especially in Asian societies, while focusing on their cultures, religion, and spirituality. It’s the responsibility of the clinicians, researchers, and health care providers to undertake the research and
recommend new ways of living for the patients and those related.

- by Sa'odah Ahmad and +1
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- Resilience, Cancer, Family Caregivers/Carers

This pilot study focused on care-giving for a child with Down syndrome (DS) in one family in Singapore, and the personal dimension of lay knowledge that has been developed in practices of care. The study explored the nature of knowledge that is created during care-giving, through the use of interviews with three female caregivers, analyzing the qualitative data, and applying grounded theory, in order to generate hypotheses for further investigation.
Themes emerged included how the experiences of caregivers reflect the ways in which the lay knowledge exists and is shared and evolves in the dynamic relationships between the caregivers and the environment. Lay knowledge is not necessarily articulated and verbalized as a body of knowledge. It is a process of development which influences caregivers’ values, attitudes, identities as well as skills and behaviors.
This study suggests three possible directions for further research. The first is a reflective work with caregivers which explores the development of lay knowledge into articulated and explicit knowledge that validates and empowers the caregiver’s identity and experiences. The second is further investigation of the ways in which caregivers’ lay knowledge could support the development of optimal accommodations for the developmental process of children with intellectual disabilities through adulthood in the context of Singapore. The third is to explore the contribution, role and lay knowledge of the foreign domestic workers as major caregivers in the home ecology in Singapore.

Deinstitutionalization has forced families of patients with schizophrenia to take responsibility of informal care, without having the tools to exert their role properly. The aim of this study was to evaluate the coping strategies of caregivers of patients with schizophrenia, belonging to the Aymara ethnic group, (aborigines who are located on the highlands of Northern Chile). The studied sample comprised 45 caregivers of patients with schizophrenia users of the Mental Health Service of Arica, Chile. The results from the Family Coping Questionnaire (FCQ) show that both, Aymara and non-Aymara caregivers use the same coping strategies except for spiritual help which is more likely to be used by Aymara. This strategy might be related with the worldview they possess, thus the relation with the deities has a meaningful importance in the way of explaining and coping with different phenomena.

- by J. Gutiérrez-maldonado
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- Psychometrics, Mental Health, Coping Strategies, Schizophrenia

The objective of this study was to examine role and process of care by caregivers to dependent
older people in communities after the long term care (LTC) policy of the Universal Coverage Scheme
was developed. This study used a purposive sampling method to select 20 caregivers who have looked
after dependent older persons in communities for longer than one year. Research tools such as general
information questionnaires, semi-structured interviews and voice recorders were used to collect qualitative
data. The data were analyzed by content analysis.
The findings illustrated that after LTC project was implemented, caregiver role and process of care
to dependent elderly in communities have evidently changed. Obviously, the knowledge and practice
skills of the caregivers, especially on activity of daily living (ADL) care, health issues, sanitation and
environment management in the elderly’s home, have gained considerably through training. Team works,
coaching and mentoring, and care buddy matching were explicitly formed, including a clear pattern of
work namely a care plan. Details of elderly persons who need care, care goal planning or rehabilitation
program and relevant information have been included in the care plan. Interestingly, ADL levels of
dependent older persons under the guidance of care managers and multidisciplinary have been
gradually improved or there was an appropriate aspect for each individual need.
Caregivers have increasing important roles particularly being care assistants to dependent older
people who have diseases required specific care. In order to be able to appropriately and sustainably
providing care to dependent older people in the community, policies and measures to promote the
advancement opportunities of caregivers and the continuous training for development of potential
caregivers should be encouraged. Stimulating the proactive services enhancement of caregivers working
together with multidisciplinary teams, motivating family members having the potential to provide care
to elderly people having specific disease, and finally, the compensation and welfare policy should be
appropriately promoted.
Keywords: caregivers, dependent older people, long-term care

- by Passakorn Suanrueang
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- Long Term Care, Family Caregivers/Carers, Older people

REFERENCE: Baril, A., M. Silverman, M.-C. Gauthier and M. Lévesque (2020). “Forgotten Wishes: End-of-life documents for trans people with dementia at the margins of legal change,” Special Issue: On the Margins of Trans Legal Changes, Canadian Journal of Law & Society, p. 1-24, doi:10.1017/cls.2020.13
ABSTRACT: Literature on the topic of trans older adults has documented a few anecdotal cases in which some trans people living with dementia forgot they transitioned and reidentified with their sex assigned at birth ("detransition"). Trans communities and their allies have encouraged trans people to engage in end-of-life planning, including the preparation of legal documents that state their wishes regarding gender identity and expression in the event of "incapacity" caused by dementia. While useful, we contend that end-of-life planning is often implicitly based on cisnormative and cognonormative (normative system based on cognitive abilities) assumptions. Such planning is founded on a stable notion of gender identity throughout the life course ("post-transition") and assumes that the pre-dementia self is better equipped to make decisions than the "demented" self. We conclude by encouraging, based on an intersectional, trans-affirmative, crip-positive, and age-positive approach, respect for the agency of trans people with dementia.
KEYWORDS: Trans and nonbinary people, end-of-life planning and documents, cisgenderism/transphobia, ableism/cogniticism, ageism, epistemic injustices.
RÉSUMÉ: Les écrits portant sur les personnes âgées trans ont documenté quelques cas anecdotiques dans lesquels des personnes trans vivant avec une démence ont oublié leur transition et se sont réidentifiées avec leur sexe assigné à la naissance (« détransition »). Les communautés trans et leurs alliés encouragent ainsi les personnes trans à s'engager dans la planification de leur fin de vie, notamment à travers la préparation de documents juridiques qui énoncent leurs souhaits relativement à leur identité et à leur expression de genre en cas « d'incapacité » causée par la démence. Bien que de tels documents s'avèrent utiles, nous soutenons que la planification de la fin de vie est souvent implicitement basée sur des hypothèses cisnormatives et cognonormatives (système normatif basé sur les capacités cognitives). Une telle planification repose sur une conception de l’identité de genre comme étant stable tout au long de la vie (« post-transition ») et suppose que le soi « pré-démence » est mieux équipé pour prendre des décisions que le soi « dément ». Nous concluons en encourageant, sur la base d’une approche intersectionnelle, trans-affirmative, crip-positive et âge-positive, le respect de l’agentivité des per- sonnes trans vivant avec une démence.
MOTS CLÉS: Personnes trans et non binaires, démence, planification de fin de vie, cisgenrisme/transphobie, capacitisme/cogniticisme, âgisme, injustices épistémiques.

- by Alexandre Baril
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- Disability Studies, Gerontology, Critical Disability Studies, Transgender Studies

The Global Care Policy Index (GCPI) is a composite index that provides a numerical assessment of a country’s support for and protection of unpaid family caregivers and paid domestic workers who do the important but often invisible work of caring for the young, old, disabled and infirm within the home. It is comprised of two sub-indices: Sub-Index A assesses policy protections for workers with family responsibilities, while Sub-Index B assess policy protections for paid domestic workers. While Cambodia’s labor laws do provide for maternity leave and some related benefits, Cambodia scored poorly for Sub-Index A due to the absence of provisions for paternity leave, dependent care leave and flexible work arrangements. Cambodia’s domestic workers are explicitly excluded from the country’s labor laws but owing to new regulations aimed at protecting some of their working conditions, the country scored better on Sub-Index B. Cambodia is rated as “Emerging,” with a total score of 3.71.

- by Anju M Paul and +1
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- Social Policy, Cambodia, Family Caregivers/Carers, Domestic workers

Background
Information on the psychometric properties of the Beck Depression Inventory II (BDI-II) in family caregivers of children with chronic diseases is currently unavailable, indicating a sig- nificant gap in the literature. Therefore, we investigated 1) which of the five evaluated mea- surement models had the best fit, 2) the scale’s reliability, and 3) the scale’s convergent validity.
Methods
In 2018, a cross-sectional ex post facto study with non-probability convenience sampling was conducted in 446 family caregivers of children with chronic diseases at the National Institute of Health in Mexico City; the family caregivers responded to the BDI-II and a battery of instruments measuring anxiety, caregiver burden, parental stress, well-being, and quality of life. A confirmatory factor analysis was conducted to determine the fit of the five models. Cronbach’s alpha and composite reliability were calculated to assess the scale’s reliability, and Spearman ́s rank correlation was used to investigate the scale’s convergent validity.
Results
This study provided evidence that the two-factor somatic-affective and cognitive model had the best fit. The BDI-II demonstrated adequate reliability and evidence of convergent valid- ity, as the BDI-II factors were positively correlated with anxiety, caregiver burden, and parental stress and negatively correlated with well-being and quality of life.
Conclusions
The findings reveal that the BDI-II is a valid, reliable, and culturally relevant instrument to measure depression in family caregivers of children with chronic diseases.

- by Filiberto Toledano-Toledano Ph.D and +1
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- Mental Health, Quality of life, Family Caregivers/Carers, Quantitative Methods
- by Marie-Pierre Moreau
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- Sociology, Gender Studies, Sociology of Education, Women's Studies

La llamada crisis de los cuidados constituye un indicador de una crisis de reproducción social que afecta al conjunto del sistema capitalista. Esta crisis ha alcanzado dimensiones globales y ha acentuado las formas de reproducción estratificada, asentadas en desigualdades de género, de clase y étnicas. En estos momentos de hegemonía neoliberal, con el adelgazamiento del Estado y de las políticas públicas, es especialmente importante debatir la reorganización total del trabajo desde una perspectiva holística, crítica y transformadora que incorpore la organización social de los cuidados. Los aportes de la economía feminista están siendo muy sustanciales en esta dimensión. La antropología a su vez ha desvelado las construcciones culturales que vinculan las actividades de cuidado a la familia y a las mujeres y que han impedido situarlas como una cuestión social y política que afectan al conjunto de la sociedad. Se trata de desvelar también que la noción de dependencia, tan vinculada a los cuidados, tiene un alcance más amplio que el que le otorgan las políticas públicas.
En esta comunicación profundizaré en los conceptos de reciprocidad y de deuda social partiendo de la idea de que la dependencia es intrínseca a los seres humanos y, si es universal e inevitable, constituye un asunto de naturaleza colectiva y de ciudadanía. Intentaré mostrar que su invisibilidad, restricción conceptual y desplazamiento al ámbito privado tienen una dimensión política, pues contribuyen a reproducir las estructuras de poder del capitalismo, que, entre otras dimensiones, se sirven de las desigualdades entre hombres y mujeres en su lógica de apropiación del trabajo y de acumulación de riqueza. Se trata en definitiva de entender el cuidado como un asunto social y político y no sólo como un asunto privado y de mujeres. Este cambio de paradigma permite plantear un reparto equilibrado de los cuidados entre individuo, familia, Estado y comunidad, así como entre hombres y mujeres y entre generaciones. Permite además ir más allá de los debates sobre la mercantilización del cuidado y de las políticas públicas, para situar nuevas formas de relación social basadas en la gestión de un bien común como es el bienestar de las personas, cuestionando a su vez los ejes de desigualdad. En esta comunicación, por consiguiente, no se trata sólo de analizar y de diagnosticar, sino de plantear desde las aportaciones de la antropología aspectos de interés social y político que cuestionan los paradigmas de hegemonía neoliberal en sus lógicas de gestión de lo social.

- by Dolors Comas d'Argemir
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- Gender Studies, Women's Studies, Family Caregivers/Carers, Public Policy

In recent years we may observe increasing interest in the development of social innovation both regarding theory as well as the practice of responding to social problems and challenges. One of the crucial challenges at the beginning of the 21st century is population ageing. Various new and innovative initiatives, programs, schemes, and projects to respond to negative consequences of this demographic process are emerging around the world. However, social theories related to ageing are still insufficiently combined with these new practices, social movements, organisational models, and institutions. Many scholars are still using notions and tools from classical theories of social gerontology or the sociology of ageing such as disengagement theory, activity theory, and successful and productive ageing. Such theories do not sufficiently explain ageing in the context of, for example, a broad use of the information and communications technologies (ICTs) including robotics and automation, new healthcare and long-term care models, advancements in the development and governance of age-friendly environments, and public engagement of older adults into co-production of services delivered by public, private, non-governmental as well as non-formal entities.

- by Andrzej Klimczuk and +1
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- Robotics, Long Term Care, Aging, Family Caregivers/Carers

Placement stability and permanency are key goals for children
in foster and adoptive care. This study is a systematic review of
the scholarly literature to better understand caregiver-related
factors (e.g., characteristics, proficiencies) that contribute to
permanency and placement stability, in order to provide
a stronger foundation for developing and improving caregiver
recruitment and training procedures. Our review of 29 qualifying
scholarly articles revealed 16 caregiver-related factors associated
with permanency and/or placement stability. This knowledge can assist in selecting resource families and guiding training development to increase caregiver proficiency in caring for foster and adoptive children.

- by Angelique G Day
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- Foster Care, Family Caregivers/Carers

Purpose: The Caregiver Quality of Life Index – Cancer (CQOLC) is used worldwide to determine levels of quality of life (QOL) of caregivers of patients with cancer; however, the few studies examining the underlying factor structure of the CQOLC have revealed differences between Western and Eastern cultures. This study sought to confirm the differences in the factor structures between the original CQOLC and a Taiwanese version.
Methods: 183 caregivers from a cancer center in Singapore participated in this exploratory cross-sectional study. All participants completed the CQOLC and a sociodemographic form; 30 participants repeated the CQOLC two weeks later.
Results: Test-retest reliability was adequate for the CQOLC; however, confirmatory factor analyses did not support either the original four-factor model or the Taiwanese five-factor model. Exploratory factor analyses suggested the retaining of five factors to form a 25-item Singapore version (CQOLC-S25): Burden, Physical/Practical Concerns, Emotional Reactivity, Self-needs, and Social Support. Inter-factor and factor-scale correlations were positively significant for all factors except Support, which was negatively correlated with Emotional Reactivity and Self-needs.
Conclusions: Cross-cultural differences, which require further investigations, appear to underlie the utility and understanding of the CQOLC. More research is needed to better understand the needs of Singapore caregivers.

- by Haikel Lim
- •
- Psychometrics, Quality of Life Studies, Cancer, Quality of life

Transnational families, while not new, are a rapidly increasing family form. Moreover, they challenge our traditional methodological and theoretical conceptualisations of family life. The dramatic increase in mobility and the revolution in modes of travel and communication across distance have made it imperative for family studies to examine the impact of processes of migration and, more specifically, distance and separation, on family relationships. In contrast to the past, migratory moves and other forms of family mobility today are more likely to be characterised by regular and frequent communication and linkages between sending and receiving areas, giving rise to conceptualisations of transnational family members and global households. Through the lens of transnational family caregiving, this chapter examines these issues, including the practical and policy implications of sustaining families across time and space.

- by Laura Merla
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- Family Caregivers/Carers, ICT, Transnational migration, Migration policies

is a multidisciplinary, peer-reviewed, international journal covering all areas related to the care of the elderly. It is affiliated to Geriatric Care and Research Organisation (GeriCaRe). It publishes articles from all fields relevant to old age such as geriatric medicine, psychiatry, neurology, nursing, end of life care, public health and related fields like gerontology, sociology, psychology, culture and law. Besides the professionals, the journal intends to reach older persons and their carers as its readers. The key feature of the articles is their contribution towards the care of elderly through reporting, discussing and debating current issues of importance. Aim and scope The Journal of Geriatric Care and Research intends to share evidence based knowledge improving care of the older persons. It is dedicated to showcase recent advances in various fields from basic sciences to medicine and social sciences to cultural and legal issues in the field of geriatric care. It takes a holistic view highlighting interrelationship of various disciplines contributing to general wellbeing and quality of life of the older persons throughout the world.

- by Journal of Geriatric Care and Research (JGCR)
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- Geriatrics, Neurology, Psychiatry, Literature

There is increasing recognition of the need to treat not only patients but also families and carers with dignity, particularly at times of stress. New hospital design includes rooms variously labelled 'Quiet', 'Family' or 'Interview' for these purposes. This paper reports on the design process used during the development of the New South Glasgow Hospitals to meet user and service owner needs. The artist leading the project utilised a biophilic design approach and a participatory process of working to both understand users' issues and also to involve users in the design of elements of the scheme.

- by Christopher N Fremantle
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- Design, Public Art, Interior Design, Family Caregivers/Carers

Questa opera è protetta dalla Legge sul diritto d'autore (Legge n. 633/1941: http://www.giustizia.it/cassazione/leggi/l633_41.html). Tutti i diritti, in particolare quelli relativi alla traduzione, alla citazione, alla riproduzione in qualsiasi forma, all'uso delle illustrazioni, delle tabelle e del materiale software a corredo, alla trasmissione radiofonica o televisiva, alla registrazione analogica o digitale, alla pubblicazione e diffusione attraverso la rete Internet sono riservati, anche nel caso di utilizzo parziale. La riproduzione di questa opera, anche se parziale o in copia digitale, è ammessa solo ed esclusivamente nei limiti stabiliti dalla Legge ed è soggetta all'autorizzazione scritta dell'Editore. La violazione delle norme comporta le sanzioni previste dalla legge. Il regolamento per l'uso dei contenuti e dei servizi presenti sul sito della Casa Editrice Liguori è disponibile al seguente indirizzo: http://www.liguori.it/politiche_contatti/default.asp?c=legal L'utilizzo in questa pubblicazione di denominazioni generiche, nomi commerciali e marchi registrati, anche se non specificamente identificati, non implica che tali denominazioni o marchi non siano protetti dalle relative leggi o regolamenti.

- by Claudia Miranda Castillo
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- Dementia, Alzheimer's Disease, Family Caregivers/Carers, Psychoeducation

This paper explores the relationship between the dimensions of a debate cited at the intersection of ageing, gender, and family care. It draws together evidence from the General Household Survey for Britain 2000 and social research to explore the contribution and conceptualization of caring by older husbands. UK research on caring reveals that among older spouses, equal numbers of husbands and wives provide intensive care. It has been argued that within late-life marriage an over-riding desire to retain independence erodes gender-determined task allocation, suggesting not only similarity but equality between wives and husbands as carers. More recent qualitative research challenges this assumption and suggests two key findings: that older husbands are motivated to care by a combination of marital duty and reciprocal love, and that they manage the tasks of caring within an instrumental framework. Further, it is clear that pre-existing gender relations continue to be powerful determinants of the experience of caring, and that marital power is retained by men in late-life marriage. Overall, the caring contribution of older husbands is imbued with positive meaning, is highly valued, and offers a distinctive role and identity; this contrasts sharply with the caring experiences of older wives. Alisoun Milne is a senior lecturer in social gerontology at the Tizard Centre, University of Kent. Her key research interests are older people with mental health problems, older carers, preventive services, and social inequalities and later life. Eleni Hatzidimitriadou is a lecturer in community psychology at the Tizard Centre, University of Kent. Her current research interests are service provision for older people and quality of life, the service user movement in welfare, citizenship rights, and user empowerment.

- by Eleni Hatzidimitriadou
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- Family Caregivers/Carers, Older Carers

Discusión y Conclusiones
En los dos estudios de validación del cuestionario realizados en población española (De la Revilla, et al., 1991; Bellón et al., 1996) existe una total concordancia respecto a su asignación en los ítems 1, 6, 7, 8 y 10 (apoyo confidencial) y 3, 5 y 11 (apoyo afectivo). En nuestro grupo los ítems 1 y 11 cargan de manera diferente con respecto a los dos factores propuestos por estos autores. Cabe destacar que las inconsistencias aparecen en las preguntas de “recibir visitas de amigos y familiares” (que en nuestro caso parece estar más relacionado con el concepto de apoyo afectivo, entendido como las demostraciones de amor y empatía) y en “visitas al hogar en caso de enfermedad” (relacionado en el grupo de personas cuidadoras con el apoyo confidencial, definido como la posibilidad de contar con otras personas). Estos resultados pueden sugerir que en el contexto de los cuidados de larga duración las visitas de personas cercanas no constituyan tanto un apoyo para contar con ellas como en el caso de la ayuda cuando la persona que cuida se encuentra enferma, y, por lo tanto, no pueden ocuparse del cuidado de la persona que depende de ellos.
Estos resultados muestran la importancia de adaptar el instrumento a las características de esta población

- by M Pilar Sanchez-López
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- Family Caregivers/Carers, Caregiving

Purpose: The purpose of this study was to determine the effectiveness of interventions for family caregivers of older adults. Design and Methods: Meta-analysis was used to synthesize the effects of 78 caregiver intervention studies for six outcome variables and six types of interventions. Results: The combined interventions produced a significant improvement of 0.14 to 0.41 standard deviation units, on average, for caregiver burden, depression, subjective well-being, perceived caregiver satisfaction, ability/knowledge, and care receiver symptoms. Intervention effects were larger for increasing caregivers' ability/knowledge than for caregiver burden and depression. Psychoeducational and psychotherapeutic interventions showed the most consistent short-term effects on all outcome measures. Intervention effects for dementia caregivers were smaller than those for other groups. The number of sessions, the setting, care receiver age, caregiver age, gender, type of caregiver-care receiver relationship (spouse vs adult child), initial burden, and study characteristics moderated the observed effects. Implications: Caregiver interventions are effective, but some interventions have primarily domain-specific effects rather than global effects. The differences between intervention types and moderators suggest ways of optimizing interventions.

- by Silvia Sorensen
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- Family Caregivers/Carers, Interventions

In the UK, widening participation in higher education has been a policy concern for several decades.1 Social divides persist, with gender, class and race key factors in terms of entry into higher education and in respect of the subject, level of education and type of institution students access.2 Yet, despite its mitigated effects, the widening participation agenda has been associated with considerable changes in the student population. In particular, many students now have
some parental responsibilities.3 This socio-demographic shift and the different needs and expectations of student parents compared with those of their ‘child- free’ counterparts give rise to some challenges for university leadership and management teams, in a context where the growing presence of this group in academia has not been matched by an equivalent policy concern.
With this context in mind, this briefing paper addresses the following questions: I What does the evidence available tell us about student parents enrolled on
university programmes? I Which provisions and interventions are in place at institutional level? I What more can be done by universities to address the presence of students
with dependent children in academia?
To address these questions, this paper draws on a review of the evidence, with specific reference to the author’s recent work in this area, funded by the Nuffield Foundation as part of its Student Parents and Women’s Education programme.4 The paper starts with a review of research on student parents, before progressing to an exploration of the provision and policies currently in place at an institutional level and how they affect this group. The final section considers some of the reasons justifying an intervention in this area and provides some recommendations for institutions. Throughout this paper and unless stated otherwise, ‘student parent’ means higher education students with dependent children for whom they are the main carer, although it is acknowledged that some of these students have other caring responsibilities – and so do some of their child-free counterparts.

- by Marie-Pierre Moreau
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- Sociology, Sociology of Education, Higher Education, Children and Families
- by Denise Miner-Williams
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- Religion, Nursing, Palliative Care, Family Caregivers/Carers

Improvements in healthcare have lead to unprecedented population ageing that affects all cultures, gender, and levels of impairment . This has profound implications, especially for ageing parents who continue to be the main carer for adult sons and daughters with disabilities. While Valuing People (Department of Health, 2001) and Valuing Carers (DHSSPS, 2002) demand that service providers must have plans for all individuals with learning disabilities who live with older carers and ensure service user choice and control, health and social care systems have not kept apace (Bamford, 2006; McDowell & Mawhinney, 2007). This report is based on interviews with 29 parents reporting on 27 adult sons and daughters with disabilities in which issues were explored in relation to present life circumstances, support from family and service providers, levels of health and impairment, and futures planning. Findings expose high levels of commitment and love for sons and daughters in the face of, oftentimes, severe disabilities and carers' ill health. Carers experienced twice the level of psychological stress than the general population and had to make life adjustments that do not concur with expectations of peers who have typically developed adult sons and daughters.

The problem of boredom in the workplace has caught the attention of researchers since the beginning of the past century. Preventing boredom is critical in terms of productivity, but also to ensure the welfare of workers, especially if their job is to care for others. When it comes to professions in which caring is the hallmark, boredom has been treated lightly and quickly. Not to mention that almost no study has been conducted to determine the causes and consequences of caregivers of older adults being bored in the workplace. Both formal and informal caregivers are potential victims of boredom, but not always in the same way. In this paper, I will briefly review and synthesize the few articles that posit boredom as a risk factor for caregivers' welfare in formal and informal settings to make a call for research as a response to the existing knowledge gap.

- by Journal of Geriatric Care and Research (JGCR) and +1
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- Family Caregivers/Carers, Informal Caregivers/Carers, Boredom, Older Adults