Spousal Care Research Articles

The Importance of Relationship in Understanding the Experiences of Spouse Mental Health Carers

The burden of caring for family members with mental illness has been researched extensively; however, knowledge of spouse carers' experiences is limited. In this article, we explore this from a carers' perspective, with 28 spouse carers, using qualitative open-ended semistructured interviews and a grounded theory approach informed by the social interactionism tradition to collect and analyze the data. We present six interrelated themes around the central theme of this being "a real and genuine relationship." The findings indicate that caring for a spouse with severe mental illness is a unique role compared with other caring roles. First and foremost, spouse carers strive for the relationship with their partner and accommodate mental illness into their lives to protect the relationship. Because of this, they often lead surreal lives marked by significant emotional pressure and isolation. This has implications for how mental health service providers work with and support spouse carers.

Exploring experiences of physical activity among people with Alzheimer's disease and their spouse carers: a qualitative study

ObjectivesTo improve understanding about the barriers and facilitators to physical activity for people with Alzheimer's disease and their spouse carers, and to consider the development of activity interventions that would be acceptable, sustainable and feasible for both groups. DesignA qualitative approach, using semi-structured interviews, facilitated exploration of physical activity in a small group of people with Alzheimer's disease and their spouse carers. SettingParticipants were recruited from one memory clinic in South West England. ParticipantsPotential participants were identified by clinical psychologists at the memory clinic and were given information about participating in the research. Five people with Alzheimer's disease and their spouse carers were subsequently recruited for semi-structured interviews, which took place at the memory clinic. Interviews were audio-recorded and transcribed verbatim. Main outcome measuresQualitative data were analysed using thematic analysis. Three major themes have been presented. ResultsThe findings illustrate the complex interplay between the overarching themes ‘self’, ‘others’ and ‘couple’ that affect physical activity for both people with Alzheimer's disease and their spouse carers, and which are linked to the progression of dementia. ConclusionsAn individually tailored approach for couples, which values the role of the carer and accounts for the progressive and changing nature of dementia, should be a guiding principle for intervention design.

Comparison of Anxiety Symptoms in Spouses of Persons Suffering from Dementia, Geriatric In-Patients and Healthy Older Persons

Objective:To describe and compare anxiety symptoms in spouses of persons suffering from dementia, geriatric in-patients and healthy controls, and to study possible risk factors associated with anxiety in these groups of older people. Method:The participants were 70 years and above: 1) 76 spouses of persons with dementia recruited from a memory clinic, 2) 98 in-patients without dementia but suffering from one or more chronic diseases, who were admitted to a geriatric department of an acute hospital, and 3) 68 healthy elderly people recruited from day-centres. The State-Trait Anxiety Inventory (STAI-X-1, 12-item) was used to tap anxiety symptoms. Results:Spouses of persons suffering from dementia expressed the same degree of anxiety symptoms as geriatric patients, and anxiety in these two groups differed significantly from the healthy elderly persons. In an adjusted linear regression analysis, anxiety, expressed as a high score on STAI-X-1, was associated with female gender (β 0.16, p=0.01); being a spousal carer (β 0.49, p <0.001) and being a geriatric patient (β 0.57, p<0.001). Conclusion:Spouses of persons suffering from dementia reported as much anxiety symptoms as geriatric in-patients and both groups reported significantly more symptoms of anxiety than healthy older persons without caring obligations. The mental health nurses should include assessment of carers' anxiety as routine.

Operationalising Recovery-oriented services: The challenges for carers

Purpose: Recovery approaches to healthcare now feature in the mental health policies and plans of many western countries. However, the operationalisation of these approaches has met with numerous challenges. This paper considers the reasons why, from the point of view of spousal or family carers of people with chronic and severe mental illness. Method: A single-case embedded study was used to analyse the process and outcomes of the implementation of Recovery-oriented services into a public health service organisation located in a major urban centre in south-eastern Australia. The unit of analysis considered in this paper is the experience of carers with the Recovery-oriented services. Findings: Seven of the ten carers who were interviewed had not heard of Recovery or the implementation of Recovery-oriented services. Nine out of the ten carers had noticed no recent improvements in the way services were delivered. Instead, most carers observed a trend to shift the responsibility for overseeing the consumer’s treatment and care from health professionals to carers. The carers went on to describe the limited support and training they receive to undertake their role; and the effects of health professionals with-holding the information required by the carer to provide effective care. Carers also identified solutions to the many service issues they identified, including the development of a designated clinical role, in which a health professional would be available to work with carers who are supporting consumers on their Recovery-journey. Conclusion: Inherent to Recovery approaches is collaboration and partnerships between all key stakeholders, including carers. It is important that mental health services focus on strengthening this aspect of service delivery to address ongoing issues with the operationalisation of Recovery-oriented services.

Operationalising Recovery-oriented services: The challenges for carers

Purpose: Recovery approaches to healthcare now feature in the mental health policies and plans of many western countries. However, the operationalisation of these approaches has met with numerous challenges. This paper considers the reasons why, from the point of view of spousal or family carers of people with chronic and severe mental illness. Method: A single-case embedded study was used to analyse the process and outcomes of the implementation of Recovery-oriented services into a public health service organisation located in a major urban centre in south-eastern Australia. The unit of analysis considered in this paper is the experience of carers with the Recovery-oriented services. Findings: Seven of the ten carers who were interviewed had not heard of Recovery or the implementation of Recovery-oriented services. Nine out of the ten carers had noticed no recent improvements in the way services were delivered. Instead, most carers observed a trend to shift the responsibility for overseeing the consumer’s treatment and care from health professionals to carers. The carers went on to describe the limited support and training they receive to undertake their role; and the effects of health professionals with-holding the information required by the carer to provide effective care. Carers also identified solutions to the many service issues they identified, including the development of a designated clinical role, in which a health professional would be available to work with carers who are supporting consumers on their Recovery-journey. Conclusion: Inherent to Recovery approaches is collaboration and partnerships between all key stakeholders, including carers. It is important that mental health services focus on strengthening this aspect of service delivery to address ongoing issues with the operationalisation of Recovery-oriented services.

Cortisol, alpha amylase, and daily stressors in spouses of persons with mild cognitive impairment.

This study examines the effects of daily primary objective stressors (behavioral problems exhibited by persons with mild cognitive impairment) and subjective stressors (unpleasant marital interactions) on the diurnal cortisol pattern and the diurnal pattern of salivary alpha-amylase (sAA) of spousal care partners. Thirty spouse care partners (age 59-85 years) participated in a 7-day diary study and submitted saliva samples on 4 consecutive study days, totaling 406 valid samples. Results from multilevel models revealed that daily objective stressors were associated with elevated cortisol levels and a flatter slope but were not associated with sAA activity. Conversely, unpleasant marital interactions were associated with flatter sAA slopes but not associated with cortisol activity. Furthermore, daily levels of sAA moderated variations in cortisol in the presence of a primary objective stressor. The utility of our research has implications for advancing scientific understanding of biosocial processes and the development of stress prevention and intervention strategies.

Using conjoint interviews with couples that have been living with disabilities and illnesses for a long time – implications and insights

This article discusses conjoint interviews and takes its starting point from a study with nine older couples who have been living with disabilities for a long period of time. Conjoint interviewing where dyads are interviewed together produces a different kind of data from individual interviews – specifically data that conduce different ways of talking about “we-ness” and produce interaction between the participants. This article discusses how this appeared in a study that was interested in the understandings and actualizations of spousal care when both have a disability or illness. The method leads to an analysis centered on mutuality and has potential to problematize traditional caring tasks and caring roles in the context of living with disability or chronic illness. Potentials and limitations of the method are discussed.

Women more distressed than men when caring for spouse with cancer

Women more distressed than men when caring for spouse with cancer

Antecedents to the integration process for recovery in older patients and spouses after a cardiovascular procedure

Social isolation, psychological state and knowledge needs are important antecedents to the process of integration for recovery from cardiovascular (CV) procedures. The purpose of this study is to measure these antecedents at 6 and 12 weeks after CV procedures in patients (greater 65 years) and their spouses. This descriptive study enrolled 318 subjects; 87 patients/73 spouses responded. There was higher spousal anxiety at 6 weeks (4.64 ± 4.2) compared with 12 weeks (3.65 ± 3.3, t = -2.17, P < 0.032). Patients rated 10 and 7 self-care knowledge needs at 6 and 12 weeks as 'very important' with significant reductions in importance for 4 needs by 12 weeks. Spouses rated 14 and 10 knowledge needs as 'very important' at 6 and 12 weeks. There were three spouse care knowledge needs that were not met at 6 weeks. Data identified higher anxiety levels in spouses, and spouse needs that were unmet at 6 weeks after CV procedures.

Family burden related to mental and physical disorders in the world: results from the WHO World Mental Health (WMH) surveys

To assess prevalence and correlates of family caregiver burdens associated with mental and physical conditions worldwide. Cross-sectional community surveys asked 43,732 adults residing in 19 countries of the WHO World Mental Health (WMH) Surveys about chronic physical and mental health conditions of first-degree relatives and associated objective (time, financial) and subjective (distress, embarrassment) burdens. Magnitudes and associations of burden are examined by kinship status and family health problem; population-level estimates are provided. Among the 18.9-40.3% of respondents in high, upper-middle, and low/lower-middle income countries with first-degree relatives having serious health problems, 39.0-39.6% reported burden. Among those, 22.9-31.1% devoted time, 10.6-18.8% had financial burden, 23.3-27.1% reported psychological distress, and 6.0-17.2% embarrassment. Mean caregiving hours/week was 12.9-16.5 (83.7-147.9 hours/week/100 people aged 18+). Mean financial burden was 15.1% of median family income in high, 32.2% in upper-middle, and 44.1% in low/lower-middle income countries. A higher burden was reported by women than men, and for care of parents, spouses, and children than siblings. The uncompensated labor of family caregivers is associated with substantial objective and subjective burden worldwide. Given the growing public health importance of the family caregiving system, it is vital to develop effective interventions that support family caregivers.

Uncovering an invisible network of direct caregivers at the end of life: A population study

Background: Most palliative care research about caregivers relies on reports from spouses or adult children. Some recent clinical reports have noted the assistance provided by other family members and friends. Aim: This population study aims to define the people who actually provide care at the end of life. Setting/participants: A South Australian study conducted an annual randomized health population survey (n=23,706) over a 7 year period. A sample was obtained of self-identifying people who had someone close to them die and ‘expected’ death in the last 5 years (n=7915). Data were standardised to population norms for gender, 10-year age group, socioeconomic status, and region of residence. Results: People of all ages indicated they provided ‘hands on’ care at the end of life. Extended family members (not first degree relatives) and friends accounted for more than half (n=1133/2028; 55.9%) of identified hands-on caregivers. These people came from the entire age range of the adult community. The period of time for which care was provided was shorter for this group of caregivers. People with extended family or friends providing care, were much more likely to be supported to die at home compared to having a spousal carer. Conclusion: This substantial network of caregivers who are mainly invisible to the health team provide the majority of care. Hospice and palliative care services need to create specific ways of identifying and engaging this cohort in order to ensure they are receiving adequate support in the role. Relying on ‘next-of-kin’ status in research will not identify them.

Everyday decision-making in dementia: findings from a longitudinal interview study of people with dementia and family carers.

Exercising choice and control over decisions is central to quality of life. The Mental Capacity Act 2005 (England and Wales) provides a legal framework to safeguard the rights of people with dementia to make their own decisions for as long as possible. The impact of this on long-term planning has been investigated; everyday decision-making in people's own homes remains unexplored. Using a phenomenological approach, we interviewed 12 dyads (one person with dementia + one carer) four times over one year to ascertain experience of decision-making, how decisions were negotiated, and how dynamics changed. Qualitative interviews were conducted in people's own homes, and thematic analysis was applied to transcripts. Respecting autonomy, decision-specificity and best interests underlay most everyday decisions in this sample. Over time, dyads transitioned from supported decision-making, where person with dementia and carer made decisions together, to substituted decision-making, where carers took over much decision-making. Points along this continuum represented carers' active involvement in retaining their relative's engagement through providing cues, reducing options, using retrospective information, and using the best interests principle. Long-term spouse carers seemed most equipped to make substitute decisions for their spouses; adult children and friend carers struggled with this. Carers may gradually take on decision-making for people with dementia. This can bring with it added stresses, such as determining their relative's decision-making capacity and weighing up what is in their best interests. Practitioners and support services should provide timely advice to carers and people with dementia around everyday decision-making, and be mindful how abilities may change.

Spouse caregivers of people with advanced dementia in nursing homes: A longitudinal narrative study

Background: Dementia is a life limiting illness and is becoming a major cause of death in developed countries. Many people with dementia die in nursing homes or long-term residential care settings. Spouse caregivers of people with dementia living in nursing homes find themselves in a position which is difficult to understand and live with. Aim: To explore the caregiving experiences of spouse carers of people with advanced dementia living in nursing homes. Design: Longitudinal narrative study using three sequential interviews and diary accounts. Setting/participants: Spouse caregivers of people with dementia nearing the end of life were recruited from two nursing homes in Northern England. Results: Twenty-seven interviews were conducted and seven diaries collected from 10 spouse caregivers (7 women and 3 men). We demonstrate that for this group the experience of caregiving is one of struggle to live in ‘two worlds’, the world of the nursing home and the world of wider society, where, in both settings, their role is often ambiguous and their position liminal. We also identify that feelings of guilt associated with nursing home placement of a spouse with dementia endure far beyond the time of the move. Conclusions: Nursing home staff need to acknowledge spouse carers in their own right, inviting them to tell their stories. We recommend that communication skills be included in educational programmes for nursing home staff. Further research is needed to determine the shape and context of carer needs assessment and support, as recommended in health policy.

Personal and spousal decision making on the funding of medical care not covered by healthcare insurance

The purpose of this study was to investigate personal and spousal decisions to seek funding for spousal medical care, when such treatments are not covered by the National Package of Healthcare Services or by other types of healthcare insurance. Research data were collected in Israel during 2008-2010 by means of structured questionnaires. The questionnaires were administered to a nonrandom sample of 160 patients with a health condition requiring private funding of treatment. The study clearly reveals that the decision to forego fundraising results not only from financial considerations. Patients' illness-related factors and available personal, spousal, and social resources are significant as well.

Patients with Dementia and Epilepsy: Does Family and Kinship Care Matters?

Paper reports nine Case Studies each of epilepsy and dementia patients. Content analysis of family and kinship care in their families reveals significant issues of social stigma, marriage, school education, employment etc. among epilepsy patients as main concern while care of dementia patients in family concerns to spouse caring. It explores stigma affecting socio-cultural understanding of epilepsy and dementia. How these patients are cared within their family. Who care them most? It illuminates relevance of family and kinship care givers and recommend culturally appropriate interventions in community of such neuropsychiatric diseases.

The Birmingham Relationship Continuity Measure: the development and evaluation of a measure of the perceived continuity of spousal relationships in dementia

Qualitative research has suggested that spousal carers of someone with dementia differ in terms of whether they perceive their relationship with that person as continuous with the premorbid relationship or as radically different, and that a perception of continuity may be associated with more person-centered care and the experience of fewer of the negative emotions associated with caring. The aim of the study was to develop and evaluate a quantitative measure of the extent to which spousal carers perceive the relationship to be continuous. An initial pool of 42 questionnaire items was generated on the basis of the qualitative research about relationship continuity. These were completed by 51 spousal carers and item analysis was used to reduce the pool to 23 items. The retained items, comprising five subscales, were then administered to a second sample of 84 spousal carers, and the questionnaire's reliability, discriminative power, and validity were evaluated. The questionnaire showed good reliability: Cronbach's α for the full scale was 0.947, and test-retest reliability was 0.932. Ferguson's δ was 0.987, indicating good discriminative power. Evidence of construct validity was provided by predicted patterns of subscale correlations with the Closeness and Conflict Scale and the Marwit-Meuser Caregiver Grief Inventory. Initial psychometric evaluation of the measure was encouraging. The measure provides a quantitative means of investigating ideas from qualitative research about the role of relationship continuity in influencing how spousal carers provide care and how they react emotionally to their caring role.

The ties that bind us: how existing relationships, health and gender shape family care in chronic obstructive pulmonary disease

Chronic obstructive pulmonary disease (COPD) changes family roles and relationship dynamics and the experience of the disease is influenced by family functioning. Merleau- Ponty&amp;rsquo;s existential philosophy of the body provided the framework for this Heideggerian phenomenological inquiry. Fifteen people with COPD and 14 family members engaged in 58 semi-structured interviews either face-to-face or by telephone. This study identified a difference in the essence of the lived experiences between male and female carers, and between spousal and non-spousal carers in relation to severe COPD. Previous reciprocity framed the level of acceptance of the caring role and perception of care burden. The stories highlight the self-perceived need for women carers to be &lt;em&gt;conscious micro-managers&lt;/em&gt; of illness. Male family members would care alongside, lending support and caring in a reactive way as specific needs or crises arose. Caring in COPD required a &lt;em&gt;binding vigilance&lt;/em&gt;; a constant need of the carer to monitor the physical and emotional well-being of the sick person that bound them emotionally and cognitively to the task of caring. Carers were the managers of crises and families cared from a perspective of possible death. Family was perceived as the best thing in life. Health professionals should consider the influence of gender, family relationships and the impact of reciprocity when planning support for family caregivers. Further research is required to identify the similarities and differences in family caring between COPD and other chronic illnesses, and to further understand the specific needs of male carers.

Grief reactions in dementia carers: a systematic review

Supporting dementia carers is an identified target of the UK government, yet we know little about such family carers' grief before and after the death of the person with dementia for whom they care. We systematically review the existing literature on characteristics, prevalence, predictors and associations of grief in dementia carers before and after death. We searched electronic databases and found 31 publications meeting predetermined criteria. Grief in dementia carers, which may be normal or complicated, is a complex reaction to losses occurring before and after death. Carers experience anticipatory grief as multiple losses for themselves (companionship, personal freedom and control) and the person with dementia. Anticipation and ambiguity about the future, anger, frustration and guilt are core features. Anticipatory grief is greatest in moderate to severe stage dementia and spouse carers, especially when the person with dementia is institutionalised. There was poor quality evidence about the prevalence of grief; studies reported anticipatory grief between 47% and 71%, and complicated grief after death is estimated around 20%. Carer depression increases with anticipatory grief. Being a spouse carer and being depressed are the strongest predictors of complicated and normal grief after death. Grief in dementia carers can be expected; however, those at risk of distressing anticipatory and complicated grief may be identified and targeted for intervention when necessary. Higher quality research from a wider range of samples and countries is needed to explore this complex and emergent topic.

Bereavement interventions, end‐of‐life cancer care, and spousal well‐being: A systematic review.

Recent comprehensive reviews have concluded that there is little evidence for the effectiveness of bereavement interventions. These reviews have not been limited to investigations of bereavement services for spouses of patients with cancer. This systematic review examined the evidence from 10 articles reporting on eight studies examining outcomes of bereavement interventions and adjustment to bereavement following specialized end-of-life patient care for spouses of patients with cancer. Patient end-of-life interventions may positively influence bereavement outcomes for spouses, but based on the available evidence, it is difficult to draw definitive conclusions about the effectiveness of bereavement group interventions for spouses of patients with cancer. Methodologically rigorous studies with larger sample sizes are required to determine the effectiveness of these interventions.

Effects of Daily Stressors on the Psychological and Biological Well-being of Spouses of Persons With Mild Cognitive Impairment

This research documents spousal accounts of daily symptoms and behaviors of their husbands or wives with mild cognitive impairment (MCI) and assesses how MCI-related symptoms and care needs are associated with spouse care partners' psychological well-being and biomarkers of physiological wear and tear. Thirty spouse care partners participated in a 7-day diary study and reported on behavior problems associated with MCI as well as daily stressors and strains they experienced. They also provided saliva samples on 4 of the study days. Multilevel models revealed daily variability and change in psychological affect and the diurnal cortisol rhythm. Daily primary stressors, everyday secondary strains, and marital interactions predicted these changes. The findings document the negative physiological effects of having a spouse with MCI and provide new details on probable causes of psychological and biological distress. They shed light on MCI-specific interventions to address couples' needs before severe disease progression occurs that could interfere with spouses' ability to provide home-based care and support.