Role recognition and changes to self-identity in family caregivers of people with advanced cancer: a qualitative study

Purpose : Family caregivers of people with advanced cancer can provide extensive support to the patient. However, the role is not well defined and their experiences are poorly understood. This study aimed to explore how caregivers view their role and the impact of their caregiving.

Methods : A symbolic interactionist framework guided the in-depth individual interviews and grounded theory methodology was used to analyse the data. A total of 17 interviews were conducted: 13 with active caregivers and 4 with bereaved caregivers.

Results : Three dominant codes are presented. Caregivers lacked role recognition, as they struggled to recognise their role existed, even though they took on extensive and challenging tasks. Caregivers reported substantial loss or changes to their self-identity: with some caregivers reporting not being able to stop thinking about caregiving and others having difficulty answering questions about themselves. Caregivers also demonstrated difficulty in taking a break: active caregivers did not consider taking a break, whereas bereaved caregivers retrospectively admitted needing a break but reported an inability to take one.

Conclusions : Caregiving is complex and extensive. People who care for those with advanced cancer are in need of intervention to provide support and assistance to them in their role. However, this needs to be structured with consideration for how caregivers view their role.

Gilles Deleuze and the space of education: poststructuralism, critical psychology, and schooled bodies

The editor and contributors to this volume are concerned that these thinkers have been misappropriated on occasions. That is why this volume concentrates on the historical and intellectual background of these philosophers.

Theoretical issues in psychology : Proceedings of the International Society for Theoretical Psychology 1999 conference

As to the former, a glance at the contents list of this volume will demonstrate both the maturity and the vigour of theoretical debate within psychology. There is a level of sophistication here that should be the cause of quiet celebration.

A monster that lives in our lives: experiences of caregivers of people with motor neuron disease and identifying avenues for support

BACKGROUND: A developing body of evidence has provided valuable insight into the experiences of caregivers of people with motor neuron disease; however, understandings of how best to support caregivers remain limited. AIM: This study sought to understand concepts related to the motor neuron disease caregiver experience which could inform the development of supportive interventions.

DESIGN: A qualitative thematic analysis of a one-off semistructured interview with caregivers was undertaken.

SETTING/PARTICIPANTS: Caregivers of people with motor neuron disease were recruited from a progressive neurological diseases clinic in Melbourne, Australia.

RESULTS: 15 caregivers participated. Three key themes were identified: (1) The Thief: the experience of loss and grief across varied facets of life; (2) The Labyrinth: finding ways to address ever changing challenges as the disease progressed; (3) Defying fate: being resilient and hopeful as caregivers tried to make the most of the time remaining.

CONCLUSIONS: Caregivers are in need of more guidance and support to cope with experiences of loss and to adapt to changeable care giving duties associated with disease progression. Therapeutic interventions which target these experiences of loss and change are worth investigation.

Characterization of the motor performance in infants with a diagnosis of Cerebral Palsy in process of rehabilitation: the importance of the proactivity of caregivers

Introduction: The progress in technology, associated to the high survival rate in premature newborn infants in neonatal intensive care units, causes an increase in morbidity. Individuals with CP present complex motor alterations, with primary deficits of abnormal muscle tone affecting posture and voluntary movement, alteration of balance and coordination, decrease of force, and loss of selective motor control with secondary problems of contractures and bone deformities.Objective: The aim of this work is to describe the spontaneous movement and strategies that lead infants with cerebral palsy to move.Methods: Seven infants used to receive assistance at the Essential Stimulation Center of CIAM (Israeli Center for Multidisciplinary Support - Philanthropic Institution), with ages ranging between six and 18 months with diagnosis of Cerebral Palsy (CP) were assessed.Results: The results show the difficulty presented by the infants with respect to the spontaneous motor functions and the necessity of help from the caregiver in order to perform the functional activity (mobility). Prematurity prevails as the major risk factor among the complications.Conclusion: The child development can be understood as a product of the dynamic interactions involving the infant, the family, and the context. Thus, the social interactions and family environment in which the infant live may encourage or limit both the acquisition of skills and the functional independence.

Moving from reclusion to partial freedom: the experience of family caregivers for disabled elderly persons assisted in a day care center

Fundação de Amparo à Pesquisa do Estado de São Paulo (FAPESP)

Dimensional analysis of burden in family caregivers of patients with obsessive-compulsive disorder

Aims: Obsessivecompulsive disorder (OCD) also generates emotional burden in the patient's family members, but no study has evaluated the specific dimensions of burden. The objectives were to evaluate the dimensions of the Zarit Burden Interview (ZBI) and possible correlates. Methods: This was a cross-sectional study involving 47 patients and 47 caregivers, using a sociodemographic questionnaire; the ZBI; the Self Reporting Questionnaire; the Family Accommodation Scale; and the YaleBrown ObsessiveCompulsive Scale. The ZBI factor analysis was conducted using Varimax Rotation. Results: Six factors were identified, explaining 74.2% of the total variance: factor 1, interference in the caregiver's personal life (36.6% of the variance); factor 2, perception of patient's dependence (10.8%); factor 3, feelings of irritation or intolerance (9.2%); factor 4, guilt (7.2%); factor 5, insecurity (5.6%); and factor 6, embarrassment (4.8%). The six ZBI factors were associated with greater OCD severity and with greater accommodation to the patient's symptoms, and factors 1, 2, 5 and 6 with caregiver's psychological morbidity. Caregiver's sex (female) was associated with factors 5 and 6, relationship with the patient (being a parent or son/daughter) with factor 5, higher educational level with factor 6, living with the patient with factor 3, worse self-evaluation of health with factors 1, 5 and 6, and occupational status (not working) with factors 1, 2, 5 and 6. Conclusion: The dimensions of burden identified indicate the most affected aspects of a caregiver's life and could guide the planning of more specific interventions. Thus, the caregiver could participate more effectively in the OCD patient's treatment, with a lower impact on his/her life.

Psychopathological features in patients with Parkinson's disease and related caregivers' burden

Conselho Nacional de Desenvolvimento Científico e Tecnológico (CNPq)