“It’s like a problem that doesn’t exist”: The emotional well-being of mothers caring for a child with brain injury.

Background: Although research has shown that significant burden and adverse psychological impact are associated with caring for a child with brain injury, limited knowledge exists concerning the qualitative experience and impact of this burden.
Objective: To provide an account of the experiences of mothers who care for a childhood survivor of brain injury.
Research design: Postal survey.
Methods and procedures: A self-report questionnaire was sent to a consecutive sample of mothers (n=86) of children (aged 8-28) with acquired brain injury, registered with a UK children’s brain injury charity. Five essay style questions enabled mothers to reflect on and describe at length their caring experiences, with particular emphasis placed on the perceived impact on emotional well-being.
Main outcomes and results: Thematic analysis identified five key themes: Perpetually Anxious, The Guilty Carer, The Labour of Caring, A Self-Conscious Apologist and Perpetually Grieving. Collectively, these themes highlight two core processes shaping mothers’ caring experiences and concomitant mental well-being. Firstly, the collective and enduring nature of caregiver burden over time. Second, the crucial role played by socio-cultural values in perpetuating caregiver burden.
Conclusions: Societal norms, particularly those relating to the nature and outcome of brain injury and motherhood, serve to marginalise mothers and increase feelings of isolation. Findings suggest the value of peer support programs as an effective means of providing appropriate social support.

Stress processes in caring for an end-of-life family member:Application of a theoretical model

Objectives: Family caregivers play a vital role in maintaining the lives of individuals with advanced illness living in the community. However, the responsibility of caregiving for an end-of-life family member can have profound consequences on the psychological, physical and financial well-being of the caregiver. While the literature has identified caregiver stress or strain as a complex process with multiple contributing factors, few comprehensive studies exist. This study examined a wide range of theory-driven variables contributing to family caregiver stress. Method: Data variables from interviews with primary family caregivers were mapped onto the factors within the Stress Process Model theoretical framework. A hierarchical multiple linear regression analysis was used to determine the strongest predictors of caregiver strain as measured by a validated composite index, the Caregiver Strain Index. Results: The study included 132 family caregivers across south-central/western Ontario, Canada. About half of these caregivers experienced high strain, the extent of which was predicted by lower perceived program accessibility, lower functional social support, greater weekly amount of time caregivers committed to the care recipient, younger caregiver age and poorer caregiver self-perceived health. Conclusion: This study examined the influence of a multitude of factors in the Stress Process Model on family caregiver strain, finding stress to be a multidimensional construct. Perceived program accessibility was the strongest predictor of caregiver strain, more so than intensity of care, highlighting the importance of the availability of community resources to support the family caregiving role.

Knowledge and perceived competence among nurses caring for the dying in long-term care homes

Background: The quality of care provided to dying long-term care (LTC) residents is often inadequate, which may be due to the lack of formal training that LTC staff receive in palliative care (PC). This cross-sectional study assessed PC knowledge and self-efficacy in ability to provide PC in a sample of registered nurses working in LTC homes. Method: A survey was conducted in four LTC homes in October 2009 to June 2010. Nursing staff knowledge of PC was evaluated using the Palliative Care Quiz for Nurses (PCQN). The Self-Efficacy in End-of-Life Care Survey (S-EOLC) was used to measure nursing staff confidence in their ability to provide PC. Findings: Close to 60% of the nursing staff participated (69 of 119). The participants did not score highly on the PCQN: the average correct score ranged from 52.50% to 63.41% across the homes. There were no significant differences between the homes for the mean number of correct responses on the PCQN (P=0.329) or mean scores for the three S-EOLC subscales. Rank ordering of the percentage of correct PCQN answers by item and LTC home demonstrated that similar misconceptions were held across homes. Conclusion: Despite their confidence in PC practice, the participants' PC knowledge gap reveals a need for PC training for staff working in LTC homes. The PC education and training provided should both include a gerontological perspective and address the expertise and knowledge already held by staff.

How well do family caregivers cope after caring for a relative with advanced disease and how can health professionals enhance their support?

Support for families during a person's advanced disease and also into the bereavement period is a major component of palliative care. However, because of the gaps in bereavement research in this area, there is a lack of evidence-based direction for health professionals.

Positive aspects and challenges associated with caring for a dying relative at home

Research has consistently shown that family caregivers have a variety of unmet needs, despite comprehensive professional support for caregivers being a central aim of palliative care. This sub-study of a larger randomized controlled trial sought feedback from 47 primary family caregivers of advanced cancer patients who had recently commenced home palliative care. During semi-structured interviews in their homes, family caregivers were asked to comment on the key challenges associated with their role and whether they could identify challenges. These were associated with their own ill health, family circumstances, insufficient skills to manage patient symptoms, limited time for themselves and inadequate support from health professionals. Despite these challenges, 60% of family caregivers were readily able to identify positive aspects of the role. Previous research has tended to focus on the negative impact of caregiving. The extent to which the positive aspects buffer the negative aspects of the role warrants further exploration, as does the long-term impact of the caregiver role on those who are unable to recognize positive elements.

How does involvement of a hospice nurse specialist impact on the experience on informal caring in palliative care? Perspectives of middle-aged partners bereaved through cancer

The aim of this study was to retrospectively explore partners' understandings and experiences in relation to caring for a loved one with a terminal illness, with a particular focus on the role of the hospice nurse specialist (HNS). Participants were purposively sampled and recruited through HNS gatekeepers. Seven middle-aged, bereaved partners participated in semi-structured, qualitative interviews. The interviews were audio recorded and transcribed verbatim and data were analysed using thematic content analysis. Five main themes emerged regarding the impact of the HNS on informal caring: ‘the ambivalence of caring’, ‘the HNS as a “confidante” in caring’, ‘the HNS as a “champion” in support’, ‘the work of the HNS – an unseen benefit’ and ‘being prepared for death and bereavement’. Findings from this study offer new insights into how involvement of a HNS impacts on the ability of carers to perform their role as an informal caregiver. Results highlight a crucial need for carers to have a clear understanding of all aspects of the HNS role so that full benefit is derived from their input. Recruitment of experienced and knowledgeable nurses is paramount, but equally important for carers is the supportive aspect of the role for which nurses need to demonstrate excellent communication skills and an intuitive, caring approach.

The Psychological and Health Consequences of Caring for a Spouse With Dementia:A Critical Comparison of Husbands and Wives

Caring for someone with dementia can be demanding, particularly for spouses living with the care recipient. The main goal of this study was to clarify differences in the experience of caregivers who were husbands and wives with respect to burden, health, healthy behaviors, presence of difficult care recipient behaviors, social supports, and the quality of the premorbid relationship. The results of this study support research demonstrating a difference between the caregiving experiences of women and men. It is becoming increasingly apparent that female gender is a marker that places them at increased risk of high burden and less support.

Parents' experiences of caring for their infant following surgery in the neonatal period: A literature review

Previous research with parents of preterm and low-birth weight infants admitted to the Neonatal Intensive Care Unit (NICU) has indicated the following: (i) parents are at risk of experiencing stress associated with the NICU environment; (ii) parents are at risk of short- and longer-term psychological distress; and (iii) the family is at risk of longer-term stress and strain. However, parents of infants admitted to the NICU for surgery are an under-researched population. This paper provides an overview of the current literature in relation to this issue. The results highlight the paucity of research conducted with parents of infants admitted to the NICU for surgery. A number of gaps and limitations were also identified in the current literature, including a lack of examination why some parents cope better than others, and a focus solely on parents of preterm and low birth weight infants. To conclude, further research with parents of infants who had surgery in the first few weeks of life is needed. Such information could help inform clinicians caring for these infants and their families, and would enable identification of those parents and families most at risk.