Being invigorated in parenthood: parents' experiences of being supported by professionals when having a disabled child

The purpose of the study was to know the meaning of parents' experiences of being supported by professionals when having a child with disability. Data were obtained through unstructured interviews with 16 parents within 10 families and analyzed by a phenomenological-hermeneutic approach. Parents narrated experiences of being supported and not being supported, and the findings are presented as contrasting meanings. Being supported by professionals means gaining confidence as a parent and having the child seen as valuable. This is interpreted as being invigorated in parenthood, where sharing the mutual task and goal, which is the child's best, with professionals is a crucial aspect. The meaning of experiences of lack of support illuminates the consequences for the entire family's well-being and the struggle parents experience to gain confidence as parents and recognition of the child as valuable.     

Chronic grief: experiences of working parents of children with chronic illness

Parents of children with chronic illness experience multiple stressors associated with their numerous roles. For parents who are working full time and caring for a child with chronic illness, the stressors related to managing work and caring responsibilities are magnified. Although the impact of caring for a child with chronic illness has been widely investigated, the literature reveals a paucity of research on the experiences of parents who are also in full time employment. This paper shares qualitative findings of a study involving interviews of twelve parents who were working full time while caring for a child with chronic illness. Data was collected through in-depth semi structured interviews and thematic analysis was then used to develop and categorise themes. Two intertwined themes are reported: (1) grief and (2) dealing with professionals. In this study, parents revealed the chronic grief they experienced in relation to their child's condition, which often recurred at various stages of the child's illness. The child's initial diagnosis was found to be the most stressful part of the grieving process, with most feeling their voices as parents were not being heard or valued by health professionals at this time. This affected parents' confidence in the health care system and triggered the re-emergence of grief, aggravating an already stressful situation. The findings illustrate that the grief experienced by these parents can be exacerbated by their dealings with health professionals. Implications for various health professionals are drawn from the findings in order to highlight avenues where guidance and support can be provided to these parents.     

Being in tune with oneself, children, and parents: meanings of being a supporter to families with children who disabilities as narrated by parent-selected professionals

The importance of giving professional support to parents who have a child with a disability is well documented in the research literature. Research from parents' perspective shows however that how support is delivered for an entire family's well-being is crucial. The aim of this study was to illuminate the meanings of being a supporter as narrated by nine parent-selected professionals. The findings show that having a personal and professional philosophy on being and doing is crucial when helping parents care for their child. Being confident that it is always possible to help means to seek unique solutions for each child and family. Being a trustworthy partner of parents means to trust in parents as invaluable partners as well as to exert efforts to gain the parents' trust, seeing parents as both persons and the child's carer, and being sensitive to parents' vulnerability. Enabling parents to gain competence and confidence in parenthood embraces the knowledge and skills necessary for the competence as their child's carer and respecting parental authority. The findings are interpreted as being in tune with oneself, children, and parents--which in this study implies freedom from being confined by bureaucracy, prestige, and institutional norms but freedom to be authentic and act according to personal philosophies.     

Seizures in infants and young children: an exploratory study of family experiences and needs for information and support.

An exploratory study of the experiences of parents caring for young children with seizure disorders and their perceived needs for information and support was conducted. A questionnaire and interview protocol was designed to elicit information about the child's seizure history, child and parent health history, medical and support services, child and family demographic information, parent experiences in caring for a young child with seizures, and perceptions about needs for information and support. Interviews were conducted with 31 parents who were recruited from a pediatric neurology clinic at a university hospital. Interviews were audiotaped, transcribed, and analyzed for major themes. The study revealed a broad range of experiences in caring for young children with seizures, and the early onset and severity of seizures often influenced these experiences. Obtaining information that was easily accessible and helped them to better understand their child's diagnosis and treatment was a challenge reported by many parents. In addition, interviews revealed that parents felt a need for support and information from individuals who were knowledgeable about the medical, developmental, emotional, and family issues related to coping with seizures in infants and young children. Recommendations for a comprehensive approach to the management of seizures for infants and young children are proposed, with particular focus on the role of nurses and early intervention professionals in providing information and support to families.     

Parents’ Experiences of the Provision of Community‐Based Family Support and Therapy Services Utilizing the Strengths Approach and Natural Learning Environments

Background In recent years, community based therapy service providers have explored different service delivery models to optimize child and family outcomes. This qualitative study aimed to explore parents’ experiences of one particular service team that adopted a strengths approach, utilizing natural learning environments. Materials and methods Nine parents undertook in‐depth, semi‐structured interviews that were taped, transcribed, and examined using thematic content analysis. Rigour was ensured through peer and member checking, field journals and an audit trail. Results Several key themes emerged including; families’ initial experiences of the service, their views of their child with a disability, their hopes for the future, and their experiences of receiving intervention from the team. Conclusions Parents were generally positive about the adoption of a strengths approach. ‘Working together’, ‘being positive’ and ‘information exchange’ were the main themes that parents’ attributed to their positive experiences with the service.     

Social and Professional Support for Parents of Adolescents with Severe Intellectual Disabilities

Background Previous research has identified various dimensions of social support that are positively associated with parental well‐being. However, most research does not include multiple measures of social support and uses heterogeneous samples in terms of child characteristics such as age and severity of intellectual disability. Methods Thirty‐three parents of adolescent children with moderate–profound intellectual disabilities completed measures of parental well‐being (stress, anxiety and depression, and caregiving satisfaction), social support (informal and formal sources, and practical and emotional support), and child characteristics (adaptive and problem behaviours). Results Correlation analyses showed that parental well‐being was associated with the child's adaptive and problem behaviours and with the child's autism diagnosis. Parents’ ratings of the helpfulness of informal sources of support (spouse, extended family, friends, etc.) was most reliably associated with parental well‐being, and remained so after controlling for child characteristics. Parents’ access of service and professional support was not associated with parental well‐being, but there was some evidence that it was related to their child's needs. Conclusions The research emphasizes the significance of including multiple measures of social support in research with families of children with an intellectual disability. Furthermore, the possibility that parents, during their child's adolescence, may be especially vulnerable to the disruption of their informal support networks is an important practical consideration.     

Between joy and sorrow: being a parent of a child with developmental disability

AIM: This study explored the experiences of parents who have children with significant developmental disability. BACKGROUND: Prevailing societal and professional assumptions of parental crisis and maladjustment in response to the 'tragedy' of having a disabled child did not accord with the authors' practice experience. Whilst parents confronted numerous difficulties, most of them appeared to manage with optimism and remarkable resourcefulness. RESEARCH DESIGN: The study, using an interpretive methodology informed by phenomenology, intensively explored the experiences of six parents of children with significant developmental disability. FINDINGS: Although they experienced much anguish and sorrow, the parents also spoke of hope, love, strength and joy. Interpretation of the parents' experiences revealed the themes of 'joy and sorrow', 'hope and no hope' and 'defiance and despair', mediated by 'the tensions'. CONCLUSIONS: This phenomenological interpretation provides insight and understanding into the parents' experiences and has implications for practice, education and research in nursing.     

Being in an alien world: Danish parents' lived experiences when a newborn or small child is critically ill

Parents of critically ill small children have received quite a lot of attention in nursing and allied health literature. However, no documented studies were found from Danish paediatric or neonatal contexts. The aim of the study therefore was to identify Danish parents’ lived experiences during a newborn or small child's critical illness. The study was undertaken in a human caring perspective assuming that caring is primary and relational, and that persons are concerned when things matter to them. Thirteen parents were interviewed twice, and data were analysed following Van Manen's phenomenological methodology. The findings revealed that being a parent when a newborn or small child is critically ill resembled being in another world, alien from what they knew and had earlier experienced. The parents wanted to be close to the child, they were seeking for an understanding of what happened, and they felt inexperienced and insecure but at the same time they were attentive and vigilant. The sub‐themes that were more prominent were ‘a need to be there’, ‘What is going on?’, ‘being vigilant’, ‘being a spectator to your own life’, and ‘oscillating between hope and hopelessness’. The study implies that the staff needs to help the parents perceive some kind of meaning of what is going on, to instill hope despite not knowing the outcome, and to accept and respect the parents’ style of coping with stress and concern for their sick child.     

Parents' experiences of participation in the care of hospitalised children: a qualitative study

BACKGROUND: The introduction of unrestricted visiting hours has led to the encouragement of parents to stay with and participate in the care of their hospitalised child. In order to stay with the hospitalised child, parents have to be away from home or work, which in turn impacts on their personal and family life. However, no published study on parents' experiences of childcare participation during paediatric hospitalisation has been found for a Chinese population. OBJECTIVES: This study explored Chinese parents' experiences of their participation in taking care of their hospitalised child. DESIGN: A qualitative exploratory design was adopted to capture parents' experiences of participation. SETTINGS: The study was conducted in four paediatric wards of a regional acute general hospital in the New Territories, a major geographical region of Hong Kong. PARTICIPANTS: Nineteen parents (16 mothers and three fathers) who had a child hospitalised for more than 48 h and identified themselves as staying comparatively longer with the child than their counterpart were recruited. METHODS: Data were collection by tape-recorded semi-structured interview. RESULTS: Four major categories that illustrated parents' experiences of participation in childcare were identified: reasons for staying with the child, rescheduling of family's routine, expectations of nurses, and comments on facility provisions. The findings highlight parents' desire for participation in caring for their hospitalised child, their unexpressed needs for communication and concern about the non-monetary costs of participation. CONCLUSIONS: Most parents viewed accompanying their hospitalised child as an unconditional aspect of being a parent and had a strong desire for participation. Parents' need for communication and emotional support during their participation of childcare in paediatric unit are universal. As Chinese parents are passive in seeking help, nurses should take the initiative in assessing their needs and offering them support accordingly.     

The experience of reassurance: patients' perspectives

This study sets out to examine reassurance from the perspective of patients from a medical and a surgical setting in a local general hospital unit The rationale for studying reassurance is discussed and it is indicated that the phenomenon of reassurance as a caring construct is under-researched The aims of the study are listed and phenomenology is used as the research method to answer the research question posed The participants were asked to describe their experiences of being reassured by the nurses Unstructured interviews were the main method of data collection and the sample consisted of eight patients of mixed gender Data were analysed using Colaizzi's procedural steps and these are described The process of research is described and ethical considerations discussed The results are described using raw data from the subjects The emerging themes include perception of the environment, 'being with', receiving information and knowledge of facts, interpersonal skills, 'being there', communication skills, trusting relationship, being cared for, assertion of optimism, and humanistic traits of the nurses In the conclusion, the limitations of the study are briefly mentioned The relevance of the findings to nursing practice are addressed and tentative recommendations for further research are made     

Parental participation and mismanagement: A qualitative study of child care in Iran

The purpose of this study was to explore parents' and nurses' experiences of parental participation in child care in hospitals in Iran. Using thematic analysis, the data were collected through interviewing 14 parents and 11 nurses from two pediatric hospitals. The results showed that four major themes emerged, including the necessity of a parent's presence, the unplanned and informal delegation of care to the parents (which itself had five subthemes: the parents as nurses, the delegation of care without sufficient and planned parental training, informal parent-to-parent support, the continuum of parents' willingness to participate, and the neglect of parents' needs), the inconsistency of care, and the parents as informal evaluators of care. Based on the study's findings, effective communication by nurses with parents is required. Nurses need to make an ongoing assessment of parents' wishes for involvement and negotiate care accordingly, with enough support and supervision to warrant quality of care.     

The Disclosure Process and its Impact on South Asian Families with a Child with Severe Intellectual Disabilities

Background Although several research studies have investigated parental experiences of the disclosure process in White families with a child with severe disabilities, little work has focused on the experiences of South Asian families. Materials and methods This study aimed to provide a rich picture of the disclosure experiences of South Asian parents of a child with severe intellectual disabilities, using semi‐structured qualitative interviews with 26 parents over two time points, and structured quantitative interviews with 136 parents. Results Parents reported variable experiences of the disclosure process, with many parents experiencing disclosure in the wrong language for them and most parents reporting little post‐disclosure support. Parents identified good practice in disclosure as prompt disclosure in the appropriate language, with the partner present (where possible), with emotional support as part of the process, with clear and practical information, and linked to post‐disclosure support from a keyworker. Conclusions Good practice in disclosure was also associated with parental understanding of their child, and parents being more likely to mobilize informal and formal supports. The implications of these findings are discussed.     

The experience of parents caring for adult children with HIV/AIDS

Antiretroviral treatment dramatically reduces mortality and prolongs the life expectancy of HIV/AIDS patients in Taiwan. The stigma attached to AIDS, and conflicts within the family result in family stress and emotional distress. Consequently, parents of adult children with HIV/AIDS endure perpetual distress while caring for their adult children. The purpose of this study is to elucidate the experiences of seven parents caring for children over 18 years of age with HIV/AIDS. Hermeneutic phenomenological methodology was applied to reveal the trajectory of parents' caring experiences and to discover the hidden meanings of the phenomena. Data were collected using semi-structured in-depth interviews lasting from 1.5 to three hours. Interviews were tape-recorded and transcribed verbatim. Data were analyzed using thematic analysis with the concept of the hermeneutic circle. Four essential themes emerged, and were identified and clarified. The parents' caring experiences were: (1) We didn't expect our children's controversial illness, so we pretend to ignore the taboo; (2) We are suffering from shame, and our daily lives and interaction with others have changed; (3) We provide advice frequently to protect our children from pain, and try our best to take care of them in order to bring them better fortune; and (4) We feel helpless in the face of predestined causality, and wish we could bear the burden of sin for our children. Unconditional love and endless responsibility, furthermore, were the essential experiences of these parents. Our findings highlight the importance of patient-center nursing care for HIV/AIDS patients and for healthcare professionals to assist HIV affected families on related family stress throughout the illness trajectory.     

Lived experiences of Jordanian mothers caring for a child with disability

Abstract

Purpose: Caring for a child with a disability in the family is associated with a major increase in care-giving demands and burden. This qualitative study explores the perspectives, challenges and adaptations of Jordanian mothers living with a child with disability.

Methods: Phenomenological qualitative tradition was utilized. Seven Jordanian mothers of children with disability were purposefully selected as having rich experiences for caring for a child with a disability. In-depth interviews were conducted using a semi-structured guide, audio-taped and transcribed verbatim. Interpretive phenomenological analysis was used to extract main themes and subthemes.

Results: Mothers’ experiences were reflected into four main themes: (1) increased perceived stigma, (2) fear for the future, (3) increased perceived care-giving burden and (4) adaptations to the child’s disability.

Conclusions: This study highlights key gaps in the provision of family-centered services for this population as well as multiple sociocultural issues impacting participation and quality of life. Healthcare professionals must deal with the child’s disability from a family-centered and cultural perspective.

• Implications for rehabilitation

• When therapists meet the whole family’s needs through a family-centered approach, the child with disability is less likely to be ignored, maltreated or abused.

• Family-centered practice adopts a sociocultural model which looks at the child from a wider point of view rather than just the disability itself. It requires therapists to review the context in which the child lives and address the specific needs of parents, siblings and other involved family members.

• Culture plays a huge role in shaping the family’s perspective on disability and has a huge impact and implications for service delivery and development, quality of life and participation for children with disability and their families.

• Rehabilitation professionals must accommodate their time schedules to provide families with the communication, education, advocacy and consultations needed.

     

Managing chronic illness: parents with a ventilator--dependent child

Ventilator-dependent children are surviving longer and increasing in number. This qualitative study was undertaken to describe the impact of a ventilator-dependent child on 10 families and to describe the management styles used by the parents. In five families, the child remained hospitalized due to the disability while in the other five the child primarily lived at home. Three major themes in managing were elicited: barriers, resources, and parenting. Parents believed they should try to normalize their child's experiences, that interactions with health care professionals required negotiation and assertiveness, and that they needed some support person(s) outside of the family.     

Parents of Adults with Intellectual Disabilities: Quality of Life and Experiences of Caring

This study examined a UK sample of parents caring for their adult offspring with intellectual disabilities, and the factors contributing to their quality of life and experiences of caregiving. Structured interviews were conducted with 62 parents of adults with intellectual disabilities. On several indices of quality of life, parents did not seem to be functioning as well as caregiving parents in the US, or as well as adults in the general US population.The offspring's level of challenging behaviour and physical dependency and the parent's satisfaction with informal support were associated with parental quality of life. The salience that parents placed on their post‐parental life style was also associated with quality of life, with ‘captive’ parents faring more poorly than ‘captivated’ parents.