The labor market consequences of family illness

BACKGROUND: This study examines the impact of mental illness on the labor market performance of family members of afflicted individuals. Numerous research projects have attempted to measure the impact of mental illness and related disorders on the ill individual, yet have traditionally neglected estimating potential costs accruing to family members of the ill. AIMS OF THE STUDY: Previous research estimating the impact of illness on the time allocation decisions of family caregivers has been limited in scope. I obtain estimates of the impact of mental illness on the probability of labor force participation and hours of work of all family members. The general analysis used in this study will pave the way for more accurate assessments of the costs of all types of illness and the estimates obtained will provide policy makers with a much more complete picture of the costs of mental illness. METHODS: The main empirical work in this study includes a probit estimation of labor force participation and a tobit regression of hours worked (including sample selection correction). The data sample, taken from the 1987 National Medical Expenditure Survey, is also partitioned by gender to clarify effects of family illness on labor supply for both females and males. RESULTS: Adult males are found to increase their probability of labor force participation in the presence of mental illness in the family (all else equal) when the mental illness is accompanied by a chronic physical illness. However, females are surprisingly found to have no significant impact on their probability of being a member of the labor market when a family member is afflicted with mental illness. On the other hand, hours of work are significantly reduced for both females and males when the mentally ill family member is afflicted with additional illnesses (physical and/or mental). DISCUSSION: Previous studies have traditionally not considered the effects of family illness on males because females are typically found to be the primary caregiver when a family member falls ill. The findings in this study indicate that men suffer reductions in their hours of work in an equivalent magnitude to females. Thus, males should not be ignored when estimating the opportunity costs of illness in families. IMPLICATIONS FOR HEALTH POLICIES: Current federal and state policies provide for some of the medical costs and replace some of the lost income of ill individuals, but generally do not support family members who are negatively affected by illness. This research provides evidence supporting the arguments of advocates for policy to ameliorate the financial burden borne by family members of the ill. IMPLICATIONS FOR FUTURE RESEARCH: The estimates obtained in this study show that women and men both need to be studied when determining the effects of family illness on labor supply, and should be studied separately to obtain clear results. Also, future research should include examining particular mental illnesses to see whether there is a higher cost of one over the other (e.g., schizophrenia versus major depression), as this may provide valuable information to policy makers. In addition, comparison of the costs of psychological disorders to chronic physical illnesses (such as cancer and heart disease) should be undertaken.     

A Social Skills Development Model: Coping Strategies for Children with Chronic Illness

The problems of children with chronic illness generally extend beyond immediate medical concerns Some of these children experience concomitant psychosocial problems This article describes a family-focused social skills development model which has been used in the children's mental health field to improve children's social interaction, impulse control, and social problem-solving skills In this model, skill training can be focused directly on the child, the family, or both, depending on the resources available, the individual family situation, and whether the child is receiving inpatient or outpatient services Possible preventative and remedial applications of this social skills development model for children and families with chronic illness are discussed.     

Stigma: a Unique Source of Distress for Family Members of Individuals with Mental Illness

To distinguish the impact of mental illness stigma from that of other negative caregiving experiences, this study examined the unique relationships between stigma and caregiver/family functioning. Adult relatives (n?=?437) of individuals with mental illness completed questionnaires regarding caregiving experiences, distress, empowerment, and family functioning, as part of a larger study. Regression analyses examined the relationship between stigma and caregiver/family variables, while controlling for other negative caregiving experiences. Stigma was uniquely associated with caregiver distress, empowerment, and family functioning. Mental illness stigma is a potent source of distress for families and an important target of family services.     

A Social Skills Development Model: Coping Strategies for Children with Chronic Illness

The problems of children with chronic illness generally extend beyond immediate medical concerns Some of these children experience concomitant psychosocial problems This article describes a family-focused social skills development model which has been used in the children's mental health field to improve children's social interaction, impulse control, and social problem-solving skills In this model, skill training can be focused directly on the child, the family, or both, depending on the resources available, the individual family situation, and whether the child is receiving inpatient or outpatient services Possible preventative and remedial applications of this social skills development model for children and families with chronic illness are discussed.     

The Silent Parent: Developing Knowledge about the Experiences of Parents with Mental Illness

This paper explores the lived experiences of parents with mental illness in Australia. It draws on in-depth interviews with parents (n=10) who have mental illness and provides an analysis of national mental health policies. The analysis of the parents’ narratives is essential in building a picture for those involved in the issues associated with directing and developing services to support parents with mental illness. This paper also provides information for workers who are often faced with a lack of good practice programmes to address the complexities that parents with mental health issues often present.

Little is known in this field about the complex needs of families who live with mental illness or recognition of the complex needs of this vulnerable group of families. In fact, there is only recently emerging evidence to indicate an awareness of children in the lives of parents with mental illness. This paper focuses upon lived experience, social process, and social policy across the troubled terrain of mental illness.     

Anticipating Loss: Learning to Live with My Father’s Cancer

In this article, I explore my experience living with my father’s cancer diagnosis and treatment, as well as how it has affected our family. I discuss how this 12-year journey of living with cancer as a chronic illness has impacted my experience and how living with the anticipation of loss has shaped me. I reflect on the dialectical tension faced by families dealing with chronic cancer and the implications for how health communication scholars explore the impact of cancer on family members.     

The Impact of Youth and Family Risk Factors on Service Recommendations and Delivery in a School-Based System of Care

The present study examines the impact of child and family risk factors on service access for youth and families in a school-based system of care. Regression analyses examined the relationships between risk factors and services recommended, services received, and dosage of services received. Logistic regression analyses examined the relationship between risk factors and whether or not youth received specific types of services within the system of care. Results revealed that youth with a personal or family history of substance use had more services recommended than youth without these risk factors, while youth with a family history of substance use received more services. Youth with a history of substance use received a significantly higher dosage of services overall. Finally, history of family mental illness was associated with receiving mental health and operational services (e.g., family advocacy, emergency funds). Implications and limitations are discussed.     

Supporting family engagement with child and adolescent mental health services: A scoping review

A key challenge facing the mental health field is connecting children and families to services when symptoms first appear. Multiple barriers inhibit timely access to treatment, and interventions to resolve barriers to care are not common among health and social care organisations. To address this research‐to‐practice gap this study undertook a scoping review of the empirical literature aimed at identifying key factors in the social ecology of families which influence family engagement with child and adolescent mental health services, then identifying and describing models of intervention designed to help facilitate access to care. Forty studies published between 1 January 2000 and 28 February 2019 were reviewed. Key factors associated with child and adolescent mental health service engagement included family attitudes towards mental illness and help seeking, the flexibility and availability of needed services, community attitudes and stigma surrounding mental illness and mental health treatment, and the degree of coordination and integration across systems of health and social care. Models of intervention to facilitate engagement with mental health services included family outreach, telephone and digital health strategies, and integrated care approaches. Empirical support is strongest for family outreach and integrated care, although telephone and digital health strategies are underexplored with children and families and a potentially promising avenue for future research. To support family engagement with child and adolescent mental health services health and social care organisations should be prepared to identify barriers in their local practice settings and integrate efficacious engagement approaches into their continuum of available services.     

Challenges and barriers in mental healthcare systems and their impact on the family: A systematic integrative review

The aim of this systematic integrative review is to analyse the challenges and barriers found in mental healthcare systems and the impact they have on the family. Searches were made of the Web of Science, Scopus, Medline and Cochrane databases using terms relating to mental health, family care and healthcare systems. We included and critically evaluated studies published in English between 2015 and 2019 that directly or indirectly analysed public mental health policies and the consequences they have for the family. We analysed our findings following the inductive content analysis approach. A total of 32 articles that met quality indicators were identified. Very closely related structural, cultural, economic and healthcare barriers were found that contribute to the treatment gap in mental health. The family covers the care systems’ deficiencies and weaknesses, and this leads to overload and a diminishing quality of life for caregivers. It is acknowledged that people with mental illness and their families should be able to participate in the development of policies and thus contribute to strengthening mental healthcare systems worldwide.     

Experiencing the relationship with a sibling coping with mental health problems: Dilemmas of connection,communication, and role

Prolonged mental health problems of one family member influences the whole family system, including sibling relationships. The current research focuses on the way siblings of persons with mental health problems experience the relationship. The findings identify the challenges and difficulties these siblings face and can help mental health practitioners support siblings as well as their brothers and sisters with mental health problems. This qualitative research employs the Interpretative Phenomenological Analysis method. Data were collected through in‐depth semi‐structured interviews with 14 adult siblings of persons coping with prolonged mental health problems. The sample included seven men and seven women, between the ages of 20–55. Three main themes were identified: (a) Connection: Between involvement and distance; (b) Communication: Controlled confrontation or cautious vagueness; (c) Role: Positioning in the sibling relationship. The discussion introduces the Relational Dialectics Theory in order to understand contradictory statements that arise from the interviewees’ experience of dialectal tensions between: involvement versus distancing; direct confrontation versus cautious vagueness; and opposing positions in relation to the sibling coping with mental health problems. A multi‐voiced discourse allows for dialogue that incorporates the contradictory poles of the dialectic, thus enabling the siblings to balance the tension in the relationship. In addition, the concept of ambiguous loss is used to interpret the findings. The study is limited by the small homogeneous sample. The results highlight the need for practitioners to give special attention to siblings of persons with mental health problems in order to help them process and cope with the challenges in the relationship, thus providing an opportunity for growth and empowerment.     

The impact of disease on family members: a critical aspect of medical care

Most existing health-related quality of life research concerns the impact of disease on patients. However, in several medical specialties including dermatology, oncology, and physical and mental disability, studies have been carried out investigating the impact of disease on the lives of families of patients. The aim of this paper is to review the literature which relates to the impact of disease on family members of patients. The OVIDSP Medline was selected as the primary database, Searches were limited to sources published in English. 158 papers were identified for review. The definition of “family” varied across the literature, and a broad definition was accepted in this review. This review shows that a wide variety of aspects of family members’ lives can be affected, including emotional, financial, family relationships, education and work, leisure time, and social activities. Many of these themes are linked to one another, with themes including financial impact and social impact being linked to emotional impact. Some positive aspects were also identified from the literature, including family relationships growing stronger. Several instruments exist to measure the impact of illness on the family, and most are disease or specialty- specific. The impact of disease on families of patients is often unrecognised and underestimated. Taking into account the quality of life of families as well as patients can offer the clinician a unique insight into issues such as family relationships and the effect of treatment decisions on the patient''s close social group of partner and family.     

Experiences of mental health discrimination in New Zealand

Discrimination against people with experience of mental illness is a recognised problem, and there is a lack of information in New Zealand regarding the nature of this discrimination. The Like Minds, Like Mine project is a New Zealand initiative to combat the stigma and discrimination associated with mental illness. This paper reports on a study undertaken as part of this initiative, and describes the nature of discrimination that people with experience of mental illness face in New Zealand. A written survey was undertaken with people with experience of mental illness from throughout New Zealand, using a mixture of qualitative and quantitative questions. This questionnaire was distributed throughout the country in 2003, using a variety of distribution methods, and 785 responses were received and analysed from people self-identifying as having experienced mental illness. Respondents reported discrimination in all areas of their lives. The most commonly reported areas were discrimination by friends and family (59%), a fear of being discriminated against (46%), and discrimination in looking for employment (34%) and mental health services (34%). Discrimination can limit the participation of people with experience of mental illness in our society. We all need to examine our own attitudes and behaviours and take responsibility for discrimination.     

A STUDY OF POSTDIAGNOSIS BREAST CANCER CONCERNS FOR WOMEN LIVING IN RURAL AND REMOTE QUEENSLAND. PART I: PERSONAL CONCERNS

The findings presented in this paper are part of a research project designed to provide a preliminary indication of the support needs of postdiagnosis women with breast cancer in remote and isolated areas in Queensland. This discussion will present data that focuses on the women's expressed personal concerns. For participants in this research a diagnosis of breast cancer involves a confrontation with their own mortality and the possibility of a reduced life span. This is a definite life crisis, creating shock and needing considerable adjustment. Along with these generic issues the participants also articulated significant issues in relation to their experience as women in a rural setting. These concerns centred around worries about how their partner and families cope during their absences for treatment, the additional burden on the family of having to cope with running the property or farm during the participant's absence or illness, added financial strain brought about by the cost of travel for treatment, maintenance of properties during absences, and problems created by time off from properties or self-employment. These findings accord with other reports of health and welfare services for rural Australian and the generic literature on psycho-oncology studies of breast cancer.     

LIVING WITH DEMENTIA

Dementia is an illness profoundly affecting the patient's physical and emotional well-being. The impact of the disease extends far beyond the patient himself, touching each family member involved in the patient's care. Social workers and other mental health professionals can offer valuable assistance to the family as they experience each stage of the patient's illness. Several theoretical constructs aid in understanding the grieving process of the family. Clinical case examples are used to highlight individual and group therapeutic interventions.     

Caring for a family member with chronic mental illness

The aim of the phenomenological study described in this article was to depict the lived world of caring for a family member with chronic mental illness. Through two individual in-depth interviews, 14 participants were asked to describe their experience of caring for a son, daughter, or parent affected by chronic mental illness. The main themes emerging from the study related to temporality, the need to "live each day as it comes" without being able to make long-term plans, and to relationality, the need to "look at the world through the other's window," always aware of how the world responds, not only to oneself but also to the person with mental illness.     

Feeding the family at the end-of-life: An ethnographic study on the role of food and eating practices for families facing death in Portugal

Little has been said about the disruptive impact that the inability to eat and to participate in mealtimes has for patients with a life-threatening illness and their families. The aim of the current study is to overcome this gap and shed light on how food and eating practices are experienced by families at the end-of-life. An ethnographic research was developed in two Portuguese palliative care units: participant observation was conducted during 10 months and in-depth interviews were carried out with 10 patients with a life-threatening illness, 20 family members and 20 palliative care professionals. Food is not only a matter of nutrition in a biological sense, but also an act of giving care to patients with a life-threatening illness. The findings suggest that food and eating practices affect the processes of relationality and of doing family at the end-of-life in Portugal. Attention is particularly paid to gender differences. The study supports recent sociological research which understands the dying process as a relational experience and intends to develop sociological knowledge on the materialities of care.     

Understanding young peoples' experience of chronic illness: a systematic review

Objective It has been reported that the diagnosis of a chronic illness increases a child's susceptibility to future mental health problems. Accordingly, the objective of the current review was to summarise the best available evidence that described a young person's experience of chronic illness and make recommendations towards the promotion of mental health and prevention of future mental health difficulties. Inclusion criteria The review considered qualitative research that used the voices of young people (under 18?years) to describe their experience of chronic illness and the impact it had on their lives. Search strategy The search strategy sought to find both published and unpublished research papers (limited to the English language). An extensive search was performed using the following databases: PubMed, CINAHL, Web of Science, PsycInfo, Aust Health, Dissertation Abstract International, Expanded Academic Index, Health Source Nursing, and Academic Search Elite. In addition, the reference lists of identified papers were hand searched, to capture all pertinent material, as well as relevant worldwide web sites. Methodological quality Each paper was assessed by two reviewers for methodological quality prior to inclusion in the review using the critical appraisal instrument (Qualitative Assessment and Review Instrument (QARI)?) from software developed by the Joanna Briggs Institute (JBI). Results A total of 18 qualitative papers were included in the review (nine grounded theory, six phenomenology, one ethnography, one social ecological, and one multiple case study). Forty-four papers were initially identified but 26 were excluded as they did not meet the inclusion criteria. Findings were extracted and meta-synthesised using JBI-QARI. Five syntheses about a young person's experience of chronic illness were derived: (i) the experience of chronic illness makes young people feel uncomfortable in their body and world; (ii) the experience of chronic illness disrupts 'normal' life; (iii) the experience of chronic illness is not all bad; (iv) ways of getting through the chronic illness experience, 'what others can do'; and (v) ways of getting through the chronic illness experience, 'what I can do'. Conclusion A positive perspective needs to be taken to promote mental health in young people with chronic illness; clinicians, families and interventions need to (i) bolster their sense of self; (ii) normalise the experience; (iii) foster its positive impact; (iv) help them accept the situation; and (v) help to develop the future-orientated coping strategies that will provide them with a sense of hope.     

Communication about parental illness with children who have learning disabilities and behavioural problems: three case studies

Parental illness can have a profound impact on family relationships and children's behaviour. The amount and nature of communication between parents and children about the illness can play an important role, both positively and negatively, in mediating the outcomes. When children have a disability, families can be reluctant to communicate with them about family difficulties. They are often concerned about the impact that parental unavailability may have on their child's life. This paper reports on three families in which the mother was diagnosed with breast cancer and one child in the family had a disability. The extent and specific characteristics of their communication about the maternal illness with their children, behavioural changes in the children, explanations of communication strategies and attributions of behavioural changes are described. Family coping strategies are examined with reference to Lazarus's process model of stress and coping and the use of either problem-focused or emotion-focused strategies. Implications for possible clinical interventions are proposed. In particular it is suggested that families be offered consultation about: what children might understand ways in which to communicate effectively and strategies for coping with the long-term implications of serious parental illness.     

Putting policy into practice? Poverty and people with serious mental illness

This paper addresses the effects of chronic poverty on people with serious mental illness. More specifically, we are concerned with the extent to which welfare restructuring, by deepening the poverty facing people with serious mental illness, undermines the expressed intent of mental health policy to improve the quality of life (QOL) of this population. The province of Ontario in Canada forms the setting for the study. The paper first examines recent trends in mental health care and social assistance policy in Ontario. While income support is consistently recognized as a core element of mental health care, welfare restructuring has led to a significant decline in the real value of income supports received by people with serious mental illness. The paper then examines the implications of this trend for the QOL of residential care facility tenants in Hamilton, Ontario. Here, the case study is explicitly connected to QOL scholarship. In addition, the study is grounded in an analysis of the broader transformation of the welfare state in Ontario. Interview data suggest that tenants experience chronic poverty that has a deleterious impact on multiple life domains including basic needs, family, social relations, leisure and self-esteem. Implications for research and policy are discussed.     

Experiencing chronic widespread pain in a family context: giving and receiving practical and emotional support

The impact of pain and chronic illness on the family has been documented, but there is little information about living with chronic widespread pain in the context of the family. This article uses data from a qualitative study of the experience of living with chronic widespread pain to examine the experience and meaning of support for people with this condition in the context of their families. It focuses on the varying, dynamic and reciprocal nature of practical and emotional support in the family. Family members may provide support but are also receivers of support from the person with chronic widespread pain. The factors mediating the provision of this support are also explored, including the nature of the pain and the needs of the person with pain, and the roles, responsibilities and characteristics of other family members.