Developing services to support parents caring for a technology-dependent child at home

BACKGROUND: A group of children with complex health care needs have emerged as a result of medical advances and government policies emphasizing the community as the arena for care. Some of these children remain dependent on the medical technology that enabled them to survive and require care of a complex and intensive nature to be carried out by their parents at home. AIMS: To explore the experiences of families caring at home for a technology-dependent child; to examine their needs for practical and other support; and to examine how far services are currently meeting these needs. Methods In-depth interviews were conducted with the parents of 24 technology-dependent children and with 44 health, social care and other professionals. RESULTS: Services in the community were not sufficiently developed to support this group of families. Major problems were identified in the purchasing and provision of both short-term care/home support services and specialist equipment/therapies in the community. Service provision could be poorly planned and co-ordinated at an operational level and few families had a designated key worker. Parents felt that professionals did not always recognize either the emotional costs entailed in providing care of this nature or their expertise in caregiving. Information-giving to parents was often described as poor and participants reported that hospital professionals failed to negotiate the transfer of caregiving responsibility to parents. CONCLUSIONS: Services need to work in partnership with families and with each other at both strategic and operational levels, to develop integrated and co-ordinated services that can meet the needs of this group of families.     

Assessing Experiences of Children Who Attended a Camp for Children with Cancer and Their Siblings: A Preliminary Study

Summer camps are commonly implemented as a psychosocial intervention for children with chronic illnesses; however, there have been few published consumer (parent and child) satisfaction evaluations of summer camps. Such evaluations are important both for improving existing services for children and families, as well as to build an empirical understanding of camp interventions. To illustrate the use of a program evaluation methodology within the context of a chronic illness summer camp, a program evaluation was conducted of a camp for children with cancer and their siblings. Results from the evaluation indicated that parents and children were highly satisfied with the camp experience, ranging from the food, staff, facilities, to campers’ activities. Campers reported that the recreation opportunities, peer support, and respite from their lives at home were reasons they appreciated the camp experience. Parents reported that peer support for their children, respite for themselves and their children, and improvements to their child’s behaviors and level of independence were helpful features of the camp experience.     

A Comparison of Physical Health Outcomes for Caregiving Parents and Caregiving Adult Children

Using data from the National Survey of Midlife Development in the United States and using the stress process model, this study compared caregiving parents and caregiving adult children with regard to health outcomes. The study sample consisted of 74 caregiving parents and 219 caregiving adult children. Predictors included type of family relationship, provision of activities of daily living, duration of caregiving, and family demands. Social support did not mediate the relations between significant predictor variables and health outcomes. The type of family relationship was associated with health outcomes with caregiving parents demonstrating poorer self‐perceived health and more chronic conditions than caregiving adult children. Perceived family demands were associated with increased number of chronic conditions for caregiving adult children and caregiving parents. Unlike previous studies that measured objective family demands, perceived family demands was found to have a strong association with the number of chronic health conditions for both groups of caregivers.     

Stability of early home intervention effects with preterm infants: one-year follow-up

The effects of an early home intervention program with prematurely born young children and their parents were assessed one year after the intervention ended, or at 28 months of age. The preterm control group continued to perform more poorly than did the preterm treatment groups or the full term control group on the Bayley motor scale. The full term group performed better than did the preterm groups on the Bayley mental scale. The preterm control group also continued to show lower maternal involvement and variety of stimulation than did the treatment groups or the full term group. While the HOME results at 28 months were not as markedly in favor of the treatment and full term groups as they were at 16 months, they continued to reflect better home environments for these than for preterm control group. These results support the claim that early home intervention focussed on the parents as active partners in the intervention and active learners of problem solving strategies of parenting issues results in lasting beneficial effects for both children and parents.     

Stability of early home intervention effects with preterm infants: one‐year follow‐up

The effects of an early home intervention program with prematurely born young children and their parents were assessed one year after the intervention ended, or at 28 months of age. The preterm control group continued to perform more poorly than did the preterm treatment groups or the full term control group on the Bayley motor scale. The full term group performed better than did the preterm groups on the Bayley mental scale. The preterm control group also continued to show lower maternal involvement and variety of stimulation than did the treatment groups or the full term group. While the HOME results at 28 months were not as markedly in favor of the treatment and full term groups as they were at 16 months, they continued to reflect better home environments for these than for preterm control group. These results support the claim that early home intervention focussed on the parents as active partners in the intervention and active learners of problem solving strategies of parenting issues results in lasting beneficial effects for both children and parents.     

Depressive Symptoms Among Parents of Newly Diagnosed Children With Cancer: A 6-Month Follow-Up study

Fifty-five parents of children with cancer participating in a longitudinal prospective study of adjustment to treatment were assessed in 6 months postdiagnosis. Initial parent depressive symptoms subsided somewhat, but depressive symptoms remained a problem for subset of parents whose initial response was in the moderate-to-severe range of depressive symptoms. Spouse support, in the form of instrumental support. along with the number of general behavioral problems exhibited by children were most strongly predictive of persistent disruption to parent mood. The results suggest that parents who report moderate-to-severe depressive symptoms might benefit from early intervention that includes behavioral strategies to improve child behavior and encouragement of a greater level of spouse involvement in caregiving tasks.     

The daily patterns of time use for parents of children with complex needs: a systematic review

The aim of this systematic review was to critically examine the research that quantifies and describes the daily patterns of time use by parents of children with complex needs. Four electronic databases were searched. A total of 32 studies (30 peer-reviewed journal articles and two theses) met the inclusion criteria. Three key findings emerged from the review: (a) Parents of children with complex needs carry a significant caregiving burden that often does not reduce as the age of the child increases, (b) supervision or 'vigilance' is a category of childcare that carries a particular time requirement for these parents and (c) parents of children with complex needs spend (sometimes considerable) time undertaking health care-related tasks outside the 'normal' parenting role. The time demands placed on parents caring for a child or children with complex needs at home should be considered when health professionals are negotiating essential and/or additional therapies or treatments to be included in a child's home care regime.     

Introduction to the Special Issue: The Impact of Poverty and Rural Status on Youth With Chronic Health Conditions

Fifty-five parents of children with cancer participating in a longitudinal prospective study of adjustment to treatment were assessed in 6 months postdiagnosis. Initial parent depressive symptoms subsided somewhat, but depressive symptoms remained a problem for subset of parents whose initial response was in the moderate-to-severe range of depressive symptoms. Spouse support, in the form of instrumental support. along with the number of general behavioral problems exhibited by children were most strongly predictive of persistent disruption to parent mood. The results suggest that parents who report moderate-to-severe depressive symptoms might benefit from early intervention that includes behavioral strategies to improve child behavior and encouragement of a greater level of spouse involvement in caregiving tasks.     

'I felt I have grown up as an adult': caregiving experience of children affected by HIV/AIDS in China

Background The growing global epidemic of HIV/AIDS has a significant impact on the lives of both people living with HIV/AIDS and their family members including children. Children of parents with HIV/AIDS may experience an increased responsibility of caregiving in family. However, limited data are available regarding the caregiving experience and its impact on psychosocial well‐being among these children. This study was designed to address these issues by using qualitative data collected from children affected by HIV/AIDS in China. Methods The qualitative data were collected in 2006 in rural central China, where many residents were infected with HIV/AIDS through unhygienic blood collection procedures. In‐depth individual interviews were conducted by trained interviewers with 47 children between 8 and 17 years of age who had lost one or both parents to AIDS. Results Findings of this study suggest that many children affected by AIDS had experienced increased responsibilities in housework and caregiving for family members. Such caregiving included caring for self and younger siblings, caring for parents with illness and caring for elderly grandparents. Positive impacts from children's participation in family caregiving included personal growth and emotional maturity. Negative consequences included physical fatigue, psychological fear and anxiety and suboptimal schooling (dropping out from school, repeated absence from school and unable to concentrate in class). Conclusion While the increased caregiving responsibilities among children reflected some cultural beliefs and had some positive effect on personal growth, the caregiving experience generally negatively effected the children's physical and mental health and schooling. The findings in the current study suggest that community‐based caregiving support is necessary in areas with high prevalence of HIV and limited resources, especially for the families lacking adult caregivers. In addition, social and psychological support should be made available for children participating in family caregiving.     

“You Are Not Alone”: Advice Giving for Parents of Children Living with Complex Chronic Conditions

ABSTRACT

Parental advice giving serves as an important form of informational support for parents of children living with complex chronic conditions (CCCs). These messages can provide backchannel insights into social challenges, best practices, and may offer different forms of experiential wisdom garnered from their own parental caregiving experiences. Contributing to the naturalistic, health-context investigations of advice messages, we interviewed 35 parents who discussed their experiences with parenting their medically complex child. Part of the broader interview protocol asked parents about advice they would offer to other parents like them. We conducted a thematic analysis of parents’ responses to these questions to understand advice content, form of advice giving messages, challenges experienced by parents, and suggested best practices for managing a child’s CCC. We present our findings and discuss implications on educating health care professionals about how to cultivate advice networks and the need for more parent peer mentoring programs.     

Fathers' Participation in Childcare Within Navajo Indian Families

Fathers' and mothers' reports of their participation in early caregiving tasks and the amount of social support they received regarding their involvement with their infants were examined for 28 two-parent Navajo Indian families. Mothers were significantly more involved in basic caregiving activities than fathers. Fathers invested about sixty percent as much time as mothers did in direct caregiving tasks. Mothers and fathers did not differ on the degree to which they reported receiving social supports for childcare tasks. Navajo parents received significantly more extrafamilial and/or institutional sources of support than family support for early caregiving activities. Navajo fathers were highly involved with their young children. The results are discussed in relation to role differences in early caregiving within Navajo families.     

Effects of a Take-Home Drug Prevention Program on Drug-Related Communication and Beliefs of Parents and Children

Five hundred and eleven fourth, fifth, and sixth grade students and their parents from six schools in northwest Arkansas participated in this study. Students were blocked on school and grade level, then assigned randomly by class to either the intervention Keep A Clear Mind (KACM) program or a waiting list control. KACM students received four weekly correspondence lessons designed to be completed at home with a parent. KACM students reported significantly less perceived peer use of alcohol, tobacco, and marijuana, as well as significantly less peer pressure susceptibility to experiment with cigarettes. Mothers in the KACM program reported significantly more recent and frequent communication with their children about refusing drugs, and significantly greater discussions with their children regarding how to resist peer pressure to use alcohol, tobacco, and marijuana. Intervention program fathers reported significantly more communication with their children concerning how to resist peer pressure to drink alcohol and use tobacco, and significantly greater motivation to help their children avoid drug use. No significant differences were found between groups on student intentions to use drugs. These data suggest a print medium that emphasizes parent-child activities holds promise for accessing families and enhancing drug prevention communication.     

Effects of a brief problem-solving intervention for parents of children with cancer

This study examines a problem-solving intervention for parents of children with cancer. It was hypothesized that the intervention would improve problem-solving ability and decrease symptoms of caregiving stress and posttraumatic stress compared controls. 39 parents were assessed at baseline, one month, and three months post-intervention. No significant results were found. This study adds to research on problem-solving interventions for parents of children with cancer. Future studies should consider timing of interventions and target parents under the highest levels of distress.     

Coaching parents to enable children's participation: An approach for working with parents and their children

In this paper, Occupational Performance Coaching (OPC) is presented as a means whereby occupational therapists can support parents in achieving goals for themselves and their children. OPC is a coaching intervention that assists parents to recognise and implement social and physical environment changes that support more successful occupational performance for themselves and their children. OPC utilises collaborative problem-solving within a coaching relationship in which parents are guided towards identifying and implementing effective, autonomous solutions to occupational performance dilemmas.
OPC is described in relation to the principles of contemporary practice; in particular that intervention is both family- and occupation-centred, and leads, as directly as possible, to the enablement of children's participation at home and in the community. Tentative empirical support for coaching parents draws on the supporting evidence for similar interventions in cognate disciplines. The unique features of OPC, namely, overt collaborative analysis of performance with parents and parent-initiated solution finding, are highlighted and their potential contributions to interventions currently employed by therapists are outlined. Recommendations are advanced as to how further research can support the adoption of this intervention strategy.     

Measuring Activation in Parents of Youth with Emotional and Behavioral Disorders

For parents of youth with emotional and behavioral disorders, activation, or having the knowledge, skills, and confidence to access and engage in appropriate services for their children, is important for managing their child’s mental health care. The Parent Activation Measure (PAM) was modified to create the Parent Patient Activation Measure-Mental Health (P-PAM-MH) to measure activation as part of a randomized controlled trial of a peer parent support intervention for parents of youth with emotional and behavioral problems. Results from this study provide initial support for use of the P-PAM-MH as a measure of activation in this population and for the reliability and validity of the measure. Implications of the findings from this study for research and practice in behavioral health are discussed.

     

Parents of mentally ill adult children living at home: rewards of caregiving

In the context of parents caring at home for an adult child with mental illness, this study explored the positive aspects and rewards of caregiving. Specifically, it measured the extent to which parents perceive their ill child as providing assistance and support--practical and emotional--and perceive their own caregiving as emotionally and mentally rewarding. One parent from each of 93 households completed a self-administered questionnaire. All the parents reported receiving help and support from their child, but perceived the satisfaction gained from fulfilling their parental duties and from learning about themselves as far more important. Their assessment of this satisfaction was entirely unaffected by the subjective and objective burdens on them and the severity of the child's illness.     

Parents' reports of their involvement in an Iranian parent-based early intervention programme for children with ASD

Based on the findings of several preliminary studies on support and services for children with autism spectrum disorder (ASD) and their parents in Iran, an early intervention programme called Omid was established. This programme is based on the social model of disability. To promote the Omid resource kit, which is a component of the ‘Omid Early Intervention Programme’, a group of Iranian parents (N?=?39) of children with ASD at the first stage of diagnosis were recruited to ascertain their thoughts on parental engagement in the intervention programme. Parents' thoughts about the resource kit, the parent workshop and the professional visit at home were collected through notes which the parents presented to the researchers. Thematic analysis of the notes and comments showed that parental engagement in the early intervention process through a resource kit was welcomed within a society in which service provision for ASD is sparse and support for children with ASD and their parents is lacking.     

Child of the Morning (book)

Despite the increase in early intervention progratos for handicapped children, little attention has been paid to the special needs of the parents of these children Pilot Parents is a peer support program that grew out of these needs This paper reports on a study of Pilot Parents based on questionnaires completed by new parents, experienced parents, and program directors in 13 programs in the United States and Canada and on personal interviews with staff and volunteers at one local program Findings include the process of implementing these programs, their major strengths, and some programmatic concerns that might be noted by professionals who work with this population.     

Pilot Parents: Peer Support for Parents of Handicapped Children

Despite the increase in early intervention progratos for handicapped children, little attention has been paid to the special needs of the parents of these children Pilot Parents is a peer support program that grew out of these needs This paper reports on a study of Pilot Parents based on questionnaires completed by new parents, experienced parents, and program directors in 13 programs in the United States and Canada and on personal interviews with staff and volunteers at one local program Findings include the process of implementing these programs, their major strengths, and some programmatic concerns that might be noted by professionals who work with this population.